II 

117TH CONGRESS 

2D SESSION S. 4866 

To establish a program to address sickle cell disease and other heritable 

hemoglobinopathies. 

IN THE SENATE OF THE UNITED STATES 

SEPTEMBER 15, 2022 

Mr. VAN HOLLEN (for himself and Mr. BOOKER) introduced the following bill; 

which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To establish a program to address sickle cell disease and 

other heritable hemoglobinopathies. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Sickle Cell Disease 

5 Treatment Centers Act of 2022’’. 


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1 SEC. 2. ESTABLISHMENT OF SICKLE CELL DISEASE AND 

2 OTHER HERITABLE HEMOGLOBINOPATHIES 

3 TREATMENT CENTERS. 

4 Subpart I of part D of title III of the Public Health 

5 Service Act (42 U.S.C. 254b et seq.) is amended by insert6 ing after section 330P (42 U.S.C. 254c–22) the following: 

7 ‘‘SEC. 330Q. SICKLE CELL DISEASE AND OTHER HERITABLE 

8 HEMOGLOBINOPATHIES TREATMENT CEN9 TERS. 

10 ‘‘(a) DEFINITIONS.—In this section: 

11 ‘‘(1) COMMUNITY-BASED ORGANIZATION.—The 

12 term ‘community-based organization’ means a com13 munity-based organization working in partnership 

14 under at least one collaborative agreement with a 

15 medical hub and spoke network. 

16 ‘‘(2) ELIGIBLE ENTITY.—The term ‘eligible en17 tity’ means any entity that is a sickle cell disease 

18 treatment hub-and-spoke network that is comprised 

19 of— 

20 ‘‘(A) a hub-and-spoke network that in21 cludes— 

22 ‘‘(i) a medical hub that is a hospital, 

23 clinic, or university health center; and 

24 ‘‘(ii) at least 1 spoke working in part25 nership with the medical hub; and 


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1 ‘‘(B) at least 1 community-based organiza2 tion working in a partnership with the hub-and3 spoke network, or the medical hub or at least 

4 one spoke of such network. 

5 ‘‘(3) HUB-AND-SPOKE NETWORK.—The term 

6 ‘hub-and-spoke network’ means a framework for de7 livery of health care services— 

8 ‘‘(A) recommended by the National Acad9 emies of Sciences, Engineering, and Medicine in 

10 its 2020 report titled, ‘Addressing Sickle Cell 

11 Disease: A Strategic Plan and Blueprint for Ac12 tion’; 

13 ‘‘(B) in which a medical hub identifies and 

14 manages a medical spoke or network of spokes, 

15 or other subsidiary entities, to provide com16 prehensive sickle cell disease care; 

17 ‘‘(C) in which such subsidiary entities serv18 ing as spokes— 

19 ‘‘(i) may initially provide limited sickle 

20 cell disease care services; and 

21 ‘‘(ii) may evolve into hubs and connect 

22 with new spokes; and 

23 ‘‘(D) in which the medical hub and spoke 

24 collaborate with a community-based organizaVerDate Sep 11 2014 23:39 Sep 20, 2022 Jkt 029200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S4866.IS S4866

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1 tion to extend services and outreach to the sick2 le cell disease community. 

3 ‘‘(4) MEDICAL HUB.—The term ‘medical hub’ 

4 means a hospital, clinic, or university health center 

5 that— 

6 ‘‘(A) has an outpatient treatment clinic, in7 fusion capabilities, telehealth capability, and ex8 perience serving individuals living with sickle 

9 cell disease; and 

10 ‘‘(B) follows widely acceptable clinical 

11 practice guidelines. 

12 ‘‘(5) SPOKE.—The term ‘spoke’ means an enti13 ty— 

14 ‘‘(A) that is— 

15 ‘‘(i) a Federally-qualified health cen16 ter, as defined in section 1861(aa) of the 

17 Social Security Act; 

18 ‘‘(ii) a Federally-qualified health cen19 ter, as defined in section 1905(l)(2)(B) of 

20 the Social Security Act; or 

21 ‘‘(iii) a hospital, clinic, or university 

22 health center that provides clinical care 

23 and has telehealth capability; 


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1 ‘‘(B) that has at least 1 collaborative 

2 agreement with a medical hub and a commu3 nity-based organization; and 

4 ‘‘(C) that incorporates a community health 

5 worker into the care team. 

6 ‘‘(b) PROGRAM ESTABLISHED.—The Secretary shall 

7 award grants to eligible entities to establish treatment 

8 centers using a hub-and-spoke framework (referred to in 

9 this section as ‘Sickle Cell Disease Treatment Centers’), 

10 for the purposes of— 

11 ‘‘(1) promoting access to coordinated longitu12 dinal health care for all patients with sickle cell dis13 ease and individuals with sickle cell trait; 

14 ‘‘(2) providing support to establish integrated 

15 health care teams for patients with sickle cell dis16 ease; 

17 ‘‘(3) improving the health and well-being of 

18 children, youth, and adults with sickle cell disease; 

19 ‘‘(4) increasing reporting on quality and other 

20 public health measures with respect to sickle cell dis21 ease treatment; 

22 ‘‘(5) accurately compiling all applicable State 

23 sickle cell newborn screening data; 

24 ‘‘(6) integrating sickle cell newborn screening 

25 data with longitudinal follow-up data on sickle cell 


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1 disease health outcomes and associated complica2 tions, in collaboration with the Sickle Cell Disease 

3 Data Collection Program of the Centers for Disease 

4 Control and Prevention; and 

5 ‘‘(7) conducting significant public health activi6 ties with respect to sickle cell disease. 

7 ‘‘(c) USE OF FUNDS BY ELIGIBLE ENTITIES.—An el8 igible entity shall use grant funds received under this sec9 tion as follows: 

10 ‘‘(1) MEDICAL HUB.—The medical hub of the 

11 eligible entity shall carry out the following: 

12 ‘‘(A) Operating and administrating costs of 

13 operating a hub-and-spoke framework. 

14 ‘‘(B) Complying with published sickle cell 

15 disease treatment guidelines, as identified by 

16 the Secretary. 

17 ‘‘(C) Educating providers on sickle cell dis18 ease treatment standards and protocols. 

19 ‘‘(D) Providing integrated care manage20 ment, which may include— 

21 ‘‘(i) primary care; 

22 ‘‘(ii) care management; and 

23 ‘‘(iii) mental health services. 

24 ‘‘(E) Coordinating specialty care services, 

25 whether provided at the medical hub or spoke. 


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1 ‘‘(F) Coordinating reproductive health 

2 services for sickle cell disease patients. 

3 ‘‘(G) Providing a dedicated sickle cell ex4 pert at the medical hub to assist in overseeing 

5 care of sickle cell disease patients at spokes and 

6 to advise the community-based organization. 

7 ‘‘(H) Educating providers on social deter8 minants of health and implicit bias that may af9 fect quality of care and life for patients with 

10 sickle cell disease, trait, or other 

11 hemoglobinopathies. 

12 ‘‘(I) Providing telehealth appointments to 

13 patients when appropriate and facilitating ac14 cess to telehealth services for sickle cell disease 

15 patients to the extent feasible. 

16 ‘‘(J) Providing medical and surgical treat17 ment to sickle cell disease patients. 

18 ‘‘(K) Implementing pediatric-to-adult 

19 health care transition programs for purposes of 

20 ensuring coordinated patient graduation from 

21 pediatric to adult providers for all patients. 

22 ‘‘(L) Providing social work services in co23 ordination with a community-based organiza24 tion. 


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1 ‘‘(M) Collecting and distributing data as 

2 required by the National Sickle Cell Disease 

3 Coordinating Center established under this sec4 tion or otherwise required by the Director of 

5 the Centers for Disease Control and Prevention. 

6 ‘‘(N) Engaging in quality improvement 

7 with respect to standards of care for health and 

8 quality of life outcomes among sickle cell dis9 ease patients as identified by the Secretary. 

10 ‘‘(2) COMMUNITY-BASED ORGANIZATION.—The 

11 community-based organization of the eligible entity 

12 shall provide or coordinate each of the following: 

13 ‘‘(A) Providing education and outreach to 

14 sickle cell disease patients, caregivers, and 

15 health providers. 

16 ‘‘(B) Providing support in addressing so17 cial determinants of health. 

18 ‘‘(C) Providing social work services in co19 ordination with a medical hub or spoke. 

20 ‘‘(D) Testing or coordinating testing for 

21 sickle cell conditions and for carrier states that 

22 put a family at risk for having a child with 

23 sickle cell disease. 

24 ‘‘(E) Engaging in quality improvement 

25 with respect to standards of care or health and 


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1 quality of life outcomes among sickle cell dis2 ease patients, as identified by the Secretary. 

3 ‘‘(3) SPOKE.—The spokes of the eligible entity 

4 shall provide or coordinate each of the following 

5 services: 

6 ‘‘(A) Collaborating with a medical hub to 

7 coordinate and support care for sickle cell dis8 ease patients. 

9 ‘‘(B) Providing the approved standards of 

10 care for such patients. 

11 ‘‘(C) Providing primary care services or 

12 specialty care. 

13 ‘‘(D) Providing telehealth appointments, as 

14 appropriate. 

15 ‘‘(E) Providing medical or surgical treat16 ment. 

17 ‘‘(F) Implementing individual care plans. 

18 ‘‘(G) Providing social work services in co19 ordination with a community-based organiza20 tion. 

21 ‘‘(H) Collecting and distributing data re22 quired by the National Sickle Cell Disease Co23 ordinating Center established under this section 

24 and the Sickle Cell Disease Data Collection 


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1 Program of the Centers for Disease Control 

2 and Prevention. 

3 ‘‘(4) ADDITIONAL USES OF FUNDS.—In addi4 tion to the uses of funds described in paragraphs 

5 (1), (2), and (3), an eligible entity selected to receive 

6 a grant under this section may use funds received 

7 through the grant— 

8 ‘‘(A) to identify and secure resources for 

9 ensuring reimbursement under, for the State in10 volved, the State plan under title XIX of the 

11 Social Security Act (or a waiver of such plan), 

12 State child health plan under title XXI of such 

13 Act (or a waiver of such plan), and other health 

14 programs for the prevention and treatment of 

15 sickle cell disease, including by working with 

16 community-based sickle cell disease organiza17 tions and other nonprofit entities; 

18 ‘‘(B) to assist sickle cell disease patients 

19 with accessing appropriate health care insur20 ance, including— 

21 ‘‘(i) through the payment of insurance 

22 premiums and cost-sharing amounts, to 

23 the extent otherwise permitted under State 

24 and Federal law; 


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1 ‘‘(ii) by working with community2 based sickle cell disease organizations and 

3 other nonprofit entities; and 

4 ‘‘(iii) by helping sickle cell disease pa5 tients know their rights with insurance 

6 programs; 

7 ‘‘(C) to facilitate access to telehealth serv8 ices for sickle cell disease patients to the extent 

9 feasible; 

10 ‘‘(D) to fund evidence-based programs that 

11 provide education to teachers and school per12 sonnel, correctional institution personnel, and 

13 health care professionals on the care of individ14 uals with sickle cell disease in health care set15 tings and other appropriate settings, including 

16 schools and prisons; 

17 ‘‘(E) to offer transportation services for 

18 sickle cell disease patients who do not have, but 

19 who need access to in-person care with the 

20 Sickle Cell Disease Treatment Centers; and 

21 ‘‘(F) to facilitate access to sickle cell trait 

22 testing and genetic counseling. 

23 ‘‘(d) APPLICATION; SELECTION.— 

24 ‘‘(1) APPLICATION.—An eligible entity desiring 

25 a grant under this section shall submit an applicaVerDate Sep 11 2014 23:39 Sep 20, 2022 Jkt 029200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\S4866.IS S4866

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1 tion to the Secretary at such time, in such manner, 

2 and containing such information as the Secretary 

3 may require, including a description of how the hub4 and-spoke entity and community-based organization 

5 will collaborate in carrying out the activities de6 scribed in subsection (c). Such an application may 

7 be submitted on behalf of the eligible entity by a 

8 hub-and-spoke network or by the community-based 

9 organization. 

10 ‘‘(2) GEOGRAPHIC DISTRIBUTION.—The Sec11 retary, acting through the Administrator of the 

12 Health Resources and Services Administration, shall 

13 award grants under this section, to the extent prac14 ticable, to eligible entities located across the United 

15 States, with a focus on regions where a dispropor16 tionate number of patients with sickle cell disease or 

17 other heritable hemoglobinopathy patients per capita 

18 reside, and with the intention of awarding grants 

19 nationwide so that patients can access more com20 prehensive sickle cell disease treatment services no 

21 matter where they reside. 

22 ‘‘(3) PRIORITIES IN MAKING AWARDS.—In 

23 awarding grants under this section, the Secretary 

24 may give priority to eligible entities that— 


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1 ‘‘(A) include at least one historically black 

2 college or university (defined as a part B insti3 tution under section 322 of the Higher Edu4 cation Act of 1965 (20 U.S.C. 1061)) or minor5 ity serving institution (defined as an eligible in6 stitution under section 371 of such Act (20 

7 U.S.C. 1067q)) that has a medical school; 

8 ‘‘(B) serve an area with a prevalence of 

9 sickle cell disease; or 

10 ‘‘(C) serve a rural area. 

11 ‘‘(4) ELIGIBLE PATIENTS.—For purposes of 

12 this section, patients who may be treated by Sickle 

13 Cell Disease Treatment Centers, or who may be sup14 ported by public health activities and other program15 ming, shall include patients with sickle cell disease, 

16 and may include patients with other heritable 

17 hemoglobinopathies. 

18 ‘‘(e) NATIONAL SICKLE CELL DISEASE COORDI19 NATING CENTER.— 

20 ‘‘(1) IN GENERAL.—The Secretary, acting 

21 through the Administrator of the Health Resources 

22 and Services Administration, shall enter into a con23 tract with an entity to serve as the National Sickle 

24 Cell Disease Coordinating Center, which shall co25 ordinate the activities conducted by grantees under 


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1 this section and carry out the activities described in 

2 paragraph (2). 

3 ‘‘(2) DUTIES.—The National Sickle Cell Dis4 ease Coordinating Center shall carry out each of the 

5 following activities: 

6 ‘‘(A) Coordinate the infrastructure of Sick7 le Cell Disease Treatment Centers established 

8 under subsection (b). 

9 ‘‘(B) Coordinate and support hub-and10 spoke frameworks. 

11 ‘‘(f) CDC SICKLE CELL DISEASE DATA COLLECTION

12 PROGRAM FOR SCD TREATMENT CENTERS.—The Sec13 retary, acting through the Director of the Centers for Dis14 ease Control and Prevention, shall coordinate the following 

15 with respect to eligible entities under this section: 

16 ‘‘(1) Collecting, coordinating, monitoring, and 

17 distributing data, best practices, and findings re18 garding the activities funded under grants made to 

19 eligible entities under this section. 

20 ‘‘(2) Collecting and maintaining up-to-date data 

21 on sickle cell disease and sickle cell trait, including 

22 subtypes as applicable, and their associated health 

23 outcomes and complications, including for the pur24 pose of— 


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1 ‘‘(A) improving national incidence and 

2 prevalence data, including the geographic dis3 tribution of affected individuals; 

4 ‘‘(B) working with the State newborn 

5 screening programs to establish a national reg6 istry of sickle cell newborn screening data to 

7 serve as a foundation for assessing longevity 

8 and the prevalence of complications resulting 

9 from sickle cell disease; 

10 ‘‘(C) identifying health disparities impact11 ing individuals born with sickle cell disease and 

12 sickle cell trait, including subtypes as applica13 ble, and other hemoglobinopathies; 

14 ‘‘(D) assessing the utilization of therapies, 

15 comprehensive complication risk screening, and 

16 strategies to prevent complications resulting 

17 from sickle cell disease and to increase quality 

18 of life; and 

19 ‘‘(E) evaluating the effects of genetic, envi20 ronmental, behavioral, and other risk factors 

21 that may affect individuals with sickle cell dis22 ease. 

23 ‘‘(3) Developing educational materials, public 

24 awareness campaigns, or other outreach programs 


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1 regarding the prevention and treatment of sickle cell 

2 disease and the prevalence of sickle cell trait. 

3 ‘‘(4) Preparing and submitting to Congress a 

4 final report that includes recommendations regard5 ing the effectiveness of the Sickle Cell Disease 

6 Treatment Centers established under subsection (b) 

7 and direct outcome measures, including— 

8 ‘‘(A) the number and type of health care 

9 resources utilized (such as emergency room vis10 its, hospital visits, length of stay, and physician 

11 visits for individuals with sickle cell disease); 

12 and 

13 ‘‘(B) the number of individuals that were 

14 tested and subsequently received genetic coun15 seling for the sickle cell trait. 

16 ‘‘(g) REQUEST FOR INFORMATION.—Not later than 

17 180 days after the date of enactment of the Sickle Cell 

18 Disease Treatment Centers Act of 2022, and in advance 

19 of each new grant cycle thereafter, the Secretary shall 

20 publish in the Federal Register a request for information 

21 seeking feedback from stakeholders on— 

22 ‘‘(1) best practices with respect to the establish23 ment and implementation of Sickle Cell Disease 

24 Treatment Centers; and 


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1 ‘‘(2) any other information that the Secretary 

2 may require. 

3 ‘‘(h) REPORT TO CONGRESS.— 

4 ‘‘(1) IN GENERAL.—Not later than 3 years 

5 after the date of the enactment of the Sickle Cell 

6 Disease Treatment Centers Act of 2022 and every 5 

7 years thereafter, the Secretary shall submit to Con8 gress a report on the impact of the Sickle Cell Dis9 ease Treatment Centers established under this sec10 tion on health outcomes for sickle cell disease pa11 tients. 

12 ‘‘(2) REPORT ELEMENTS.—The report de13 scribed in this section shall include— 

14 ‘‘(A) a summary and description of eligible 

15 entities operating a hub-and-spoke framework 

16 that are receiving grant funds under this sec17 tion; 

18 ‘‘(B) information about the specific activi19 ties supported by grant funds awarded under 

20 this section with respect to each eligible entity; 

21 and 

22 ‘‘(C) the number of sickle cell disease pa23 tients served by grant programs funded under 

24 this section and demographic information about 


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1 those patients, including race, sex, gender, geo2 graphic location, and age. 

3 ‘‘(i) AUTHORIZATION OF APPROPRIATIONS.—There 

4 are authorized to be appropriated to carry out this section, 

5 $535,000,000 for fiscal year 2023 and each fiscal year 

6 thereafter. Of the amount made available for a fiscal year 

7 under the preceding sentence, not less than— 

8 ‘‘(1) 70 percent shall be used to award grants 

9 to at least 128 eligible entities where the application 

10 is submitted by medical hubs or spokes; 

11 ‘‘(2) 20 percent shall be used to award grants 

12 to at least 100 eligible entities where the application 

13 is submitted by community-based sickle cell disease 

14 organizations or nonprofit entities that are part of 

15 an eligible entity; 

16 ‘‘(3) 5 percent shall be used for the establish17 ment and maintenance of the National Sickle Cell 

18 Disease Coordinating Center described in subsection 

19 (e); and 

20 ‘‘(4) 5 percent shall be used for the activities of 

21 the Sickle Cell Data Collection program of the Cen22 ters for Disease Control and Prevention described in 

23 this section.’’. 

Æ 


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