I 
118TH CONGRESS 
2D SESSION 
H. R. 9872 
To establish a program to address sickle cell disease and other heritable 
hemoglobinopathies. 
IN THE HOUSE OF REPRESENTATIVES 
SEPTEMBER 27, 2024 
Ms. LEE of California (for herself, Ms. ADAMS, and Mr. DAVIS of Illinois) in-
troduced the following bill; which was referred to the Committee on En-
ergy and Commerce 
A BILL 
To establish a program to address sickle cell disease and 
other heritable hemoglobinopathies. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Sickle Cell Disease 
Treatment Centers Act of 2024’’. 
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‘‘(ii) may increase services over time 
to meet the definition of medical hubs and 
connect with new spokes; and 
‘‘(C) in which the medical hub and spoke 
has a partnership with one or more community- 
based organizations to extend services and out-
reach to the sickle cell disease community. 
‘‘(3) MEDICAL HUB.—The term ‘medical hub’ 
means a hospital, clinic, or university health center 
that— 
‘‘(A) provides comprehensive sickle cell dis-
ease treatment, which may include medical and 
surgical treatment, such as provision of stem 
cell transplants and cell and gene therapies, an 
outpatient treatment clinic led by a board-cer-
tified hematologist, infusion capability, tele-
health capability, genetic counseling, access to 
home care, and a pharmacy; 
‘‘(B) has experience serving individuals liv-
ing 
with 
sickle 
cell 
disease 
or 
other 
hemoglobinopathies; 
‘‘(C) follows consensus-based clinical prac-
tice guidelines; and 
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‘‘(D) may be a grantee or coordinate with 
grantees of the Sickle Cell Disease Treatment 
Demonstration Program under section 1106(b). 
‘‘(4) SPOKE.—The term ‘spoke’ means an enti-
ty— 
‘‘(A) that provides health care services, in-
cluding— 
‘‘(i) a Federally-qualified health cen-
ter, as defined in section 1905(l)(2)(B) of 
the Social Security Act; 
‘‘(ii) a hospital, clinic, or university 
health center that provides clinical care 
and has telehealth capability; 
‘‘(iii) a primary care provider; 
‘‘(iv) an outpatient treatment clinic; 
‘‘(v) an infusion center; or 
‘‘(vi) other health care providers; 
‘‘(B) that has at least 1 collaborative 
agreement with a medical hub and one or more 
community-based organization; and 
‘‘(C) that incorporates a community health 
worker into the care team. 
‘‘(b) PROGRAM ESTABLISHED.—The Secretary shall 
award grants to eligible entities to establish treatment 
centers using a hub-and-spoke framework (referred to in 
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this section as ‘Sickle Cell Disease Treatment Centers’), 
for the purposes of— 
‘‘(1) promoting access to coordinated, lifelong 
health care for all patients with sickle cell disease; 
‘‘(2) providing support to establish integrated 
health care teams for patients with sickle cell disease 
over a patient’s lifetime; 
‘‘(3) improving the health and well-being of 
children, youth, and adults with sickle cell disease; 
‘‘(4) improving the pediatric-to-adult health 
care transition; 
‘‘(5) collecting and contributing clinical data 
from States participating in the Sickle Cell Data 
Collection program of the Centers for Disease Con-
trol and Prevention, including the collection of 
health outcomes and associated complications re-
ported pursuant to such program; 
‘‘(6) ensuring that reporting with respect to 
sickle cell disease includes reporting on all patients 
with sickle cell disease, including migrating and for-
eign-born patients; and 
‘‘(7) conducting significant public health aware-
ness and education activities with respect to sickle 
cell disease and sickle cell trait. 
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‘‘(c) ELIGIBLE ENTITY.—The term ‘eligible entity’ 
means any entity that is comprised of— 
‘‘(1) a hub-and-spoke network that includes— 
‘‘(A) a medical hub that is a hospital, clin-
ic, or university health center; and 
‘‘(B) at least 1 spoke working in partner-
ship with the medical hub; and 
‘‘(2) at least 1 community-based nonprofit or-
ganization working in a partnership with the hub- 
and-spoke network. 
‘‘(d) USE OF FUNDS BY ELIGIBLE ENTITIES.—An 
eligible entity shall use grant funds received under this 
section as follows: 
‘‘(1) MEDICAL HUB.—The medical hub of the 
eligible entity shall carry out the following: 
‘‘(A) Operating and administrating costs of 
operating a hub-and-spoke framework. 
‘‘(B) Complying with consensus-based sick-
le cell disease treatment guidelines, as identified 
by the Secretary. 
‘‘(C) Educating health care providers on 
sickle cell disease treatment standards and pro-
tocols. 
‘‘(D) Providing integrated care manage-
ment, which may include— 
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‘‘(i) primary care; 
‘‘(ii) specialty care; 
‘‘(iii) pain management; 
‘‘(iv) mental health services; 
‘‘(v) genetic counseling services; and 
‘‘(vi) other providers. 
‘‘(E) Coordinating specialty care services, 
whether provided at the medical hub or spoke. 
‘‘(F) Coordinating reproductive health and 
family planning services for patients with sickle 
cell disease, trait, or other hemoglobinopathies. 
‘‘(G) Providing a dedicated sickle cell ex-
pert at the medical hub to assist in overseeing 
care of sickle cell disease patients at spokes and 
to advise the community-based organization. 
‘‘(H) Educating health care providers on 
social determinants of health and implicit bias 
that may affect quality of care and life for pa-
tients with sickle cell disease, trait, or other 
hemoglobinopathies. 
‘‘(I) Providing telehealth appointments to 
patients when appropriate and facilitating ac-
cess to telehealth services for sickle cell disease 
patients to the extent feasible. 
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‘‘(J) 
Implementing 
pediatric-to-adult 
health care transition programs for purposes of 
ensuring coordinated patient graduation from 
pediatric to adult providers for all patients. 
‘‘(K) Providing social work services or 
community health worker services in coordina-
tion with one or more community-based organi-
zations. 
‘‘(L) Collecting and distributing data as 
required by the National Sickle Cell Disease 
Coordinating Center established under sub-
section (f) or otherwise required by the Sec-
retary. 
‘‘(M) Engaging in quality improvement 
with respect to such standards of care for 
health and quality of life outcomes among sickle 
cell disease patients as the Secretary may re-
quire. 
‘‘(2) COMMUNITY-BASED ORGANIZATION.—The 
community-based organization of the eligible entity 
shall provide or coordinate services to patients and 
families, which may include the following: 
‘‘(A) Providing education and outreach to 
individuals at-risk for sickle cell trait, individ-
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uals with sickle cell trait, sickle cell disease pa-
tients, caregivers, and health care providers. 
‘‘(B) Providing support in addressing so-
cial determinants of health, such as food insecu-
rity, housing insecurity, and access to education 
and transportation. 
‘‘(C) Providing social work services or com-
munity health worker services in coordination 
with a medical hub or spoke. 
‘‘(D) Testing or coordinating testing for 
individuals at-risk for sickle cell trait and indi-
viduals with sickle cell trait that increase the 
likelihood of having a child with sickle cell dis-
ease, including through coordination with a ge-
netic counselor. 
‘‘(E) Engaging in quality improvement 
with respect to standards of care or health and 
quality of life outcomes among sickle cell dis-
ease patients, as identified by the Secretary. 
‘‘(3) SPOKE.—The spokes of the eligible entity 
shall provide or coordinate each of the following 
services: 
‘‘(A) Collaborating with a medical hub to 
coordinate and support care for sickle cell dis-
ease patients. 
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‘‘(B) Providing standards of care as devel-
oped in coordination with the medical hub. 
‘‘(C) Providing primary care services, ge-
netic counseling, or specialty care. 
‘‘(D) Providing telehealth appointments, as 
appropriate. 
‘‘(E) Providing medical or surgical treat-
ment. 
‘‘(F) Implementing individual care plans. 
‘‘(G) Providing social work services or 
community health worker services in coordina-
tion with one or more community-based organi-
zations. 
‘‘(H) Collecting and distributing data as 
required by the National Sickle Cell Disease 
Coordinating Center established under sub-
section (f). 
‘‘(4) ADDITIONAL USES OF FUNDS.—In addi-
tion to the uses of funds described in paragraphs 
(1), (2), and (3), an eligible entity selected to receive 
a grant under this section may use funds received 
through the grant— 
‘‘(A) to identify and secure resources for 
ensuring reimbursement under, for the State in-
volved, the State plan under title XIX of the 
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Social Security Act (or a waiver of such plan), 
State child health plan under title XXI of such 
Act (or a waiver of such plan), and other health 
programs for the prevention and treatment of 
sickle cell disease, including by working with 
community-based sickle cell disease organiza-
tions and other nonprofit entities; 
‘‘(B) to assist sickle cell disease patients 
with accessing appropriate health insurance, in-
cluding— 
‘‘(i) through the payment of insurance 
premiums and cost-sharing amounts, to 
the extent otherwise permitted under State 
and Federal law; 
‘‘(ii) by working with community- 
based sickle cell disease organizations and 
other nonprofit entities; and 
‘‘(iii) by helping sickle cell disease pa-
tients know their rights with insurance 
programs; 
‘‘(C) to facilitate access to telehealth serv-
ices for sickle cell disease patients and individ-
uals with sickle cell trait, to the extent feasible; 
‘‘(D) to fund evidence-based programs that 
provide education to health care providers, 
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teachers and school personnel, and correctional 
institutional personnel, on the care of individ-
uals with sickle cell disease or trait in health 
care settings and other appropriate settings, in-
cluding schools and prisons; 
‘‘(E) to develop a system of social and 
community supports, including transportation 
services or travel reimbursement for sickle cell 
disease patients who do not have, but who need 
access to, in-person care with the Sickle Cell 
Disease Treatment Centers; and 
‘‘(F) to facilitate access to sickle cell trait 
testing and genetic counseling. 
‘‘(e) APPLICATION; SELECTION.— 
‘‘(1) APPLICATION.—An eligible entity desiring 
a grant under this section shall submit an applica-
tion to the Secretary at such time, in such manner, 
and containing such information as the Secretary 
may require, including a description of how the hub- 
and-spoke entity and community-based organization 
will collaborate in carrying out the activities de-
scribed in subsection (c). 
‘‘(2) GEOGRAPHIC
DISTRIBUTION.—The Sec-
retary shall award grants under this section, to the 
extent practicable, to eligible entities, with a focus 
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on regions where a disproportionate number of pa-
tients with sickle cell disease, individuals with sickle 
cell trait, or other heritable hemoglobinopathy pa-
tients per capita reside, and to eligible entities na-
tionwide so that patients can access more com-
prehensive sickle cell disease treatment services no 
matter where they reside. 
‘‘(3) PRIORITIES
IN
MAKING
AWARDS.—In 
awarding grants under this section, the Secretary 
may give priority to eligible entities that— 
‘‘(A) include at least one historically black 
college or university (defined as a part B insti-
tution under section 322 of the Higher Edu-
cation Act of 1965 (20 U.S.C. 1061)) or minor-
ity serving institution (defined as an eligible in-
stitution under section 371 of such Act (20 
U.S.C. 1067q)) that has a medical school, nurs-
ing school, nurse practitioner or physician as-
sistant program, genetic counseling program, or 
school of social work; 
‘‘(B) serve an area with a high prevalence 
of sickle cell disease; or 
‘‘(C) serve a rural area. 
‘‘(f) NATIONAL SICKLE CELL DISEASE COORDI-
NATING CENTER.— 
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‘‘(1) IN GENERAL.—The Secretary shall estab-
lish, or enter a cooperative agreement with an entity 
to establish, the National Sickle Cell Disease Coordi-
nating Center, which shall coordinate the activities 
conducted by grantees under this section and carry 
out the activities described in paragraph (2). 
‘‘(2) DUTIES.—The National Sickle Cell Dis-
ease Coordinating Center shall carry out each of the 
following activities: 
‘‘(A) Advise the Secretary on the design 
and implementation of, and coordinate the in-
frastructure of, the Sickle Cell Disease Treat-
ment Centers established under subsection (b), 
including with respect to administrative require-
ments and ensuring that sickle cell health care 
is available across the United States. 
‘‘(B) Develop a national strategy for the 
practice of equitable care, coordinated com-
prehensive quality care, research and resources 
for patients and health care providers, and 
treatment modality options to improve patient 
outcomes, and submit such national strategy to 
the Secretary. 
‘‘(C) Coordinate with Federal agencies to 
improve data collection over the lifespan of pa-
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tients and routinely update a national needs as-
sessment to improve care for individuals im-
pacted by sickle cell disease. 
‘‘(D) Coordinate with hub-and-spoke net-
works, patients, researchers, and health care 
providers to maintain a comprehensive sickle 
cell research, treatment, and national care 
strategy. 
‘‘(E) Establish a rotating panel of stake-
holders, including health care providers, pa-
tients, individuals impacted by sickle cell dis-
ease, allied health professionals, care coordina-
tors, social workers, community health workers, 
and sickle cell community-based and advocacy 
organizations to advise the Center, provide up- 
to-date information and forecasts on status and 
plans for improving sickle cell care, treatment, 
and access to treatment modalities for individ-
uals and families living with sickle cell disease. 
‘‘(F) Coordinate and support hub-and- 
spoke frameworks. 
‘‘(G) Support improvement in patient and 
family-centered care, health outcomes, and care 
affordability by improving access to care. 
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‘‘(H) Provide or coordinate technical as-
sistance and support to health care providers, 
family members and advocates, public health 
professionals, policymakers, and patients that 
want to improve access to quality care, tele-
medicine, family planning, health care transi-
tion, and family and community engagement. 
‘‘(I) Inform and educate the public about 
sickle cell disease, sickle cell trait, and options 
for quality care. 
‘‘(g) CDC SICKLE CELL DISEASE DATA COLLECTION 
PROGRAM FOR SCD TREATMENT CENTERS.—The Sec-
retary, acting through the Director of the Centers for Dis-
ease Control and Prevention, in coordination with the Na-
tional Sickle Cell Coordinating Center established under 
subsection (f), shall carry out the following: 
‘‘(1) Collecting, coordinating, monitoring, and 
distributing data, best practices, and findings re-
garding the activities funded under grants made to 
eligible entities under this section. 
‘‘(2) Collecting and maintaining up-to-date data 
on sickle cell disease, including subtypes as applica-
ble, and their associated health outcomes and com-
plications, in consultation with States participating 
in the Sickle Cell Data Collection of the Centers for 
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Disease Control and Prevention, including for the 
purpose of— 
‘‘(A) improving national incidence and 
prevalence data, including the geographic dis-
tribution of affected individuals; 
‘‘(B) identifying health disparities impact-
ing individuals born with sickle cell disease, in-
cluding subtypes as applicable, and other 
hemoglobinopathies; 
‘‘(C) assessing the utilization of therapies, 
comprehensive complication risk screening, and 
strategies to prevent complications resulting 
from sickle cell disease and to increase quality 
of life; and 
‘‘(D) evaluating the effects of genetic, envi-
ronmental, behavioral, and other risk factors 
that may affect individuals with sickle cell dis-
ease. 
‘‘(3) Developing educational materials, public 
awareness campaigns, or other outreach programs 
regarding the inheritance pattern, treatment of, and 
prevention of complications from sickle cell disease 
and prevalence of sickle cell trait, as well as pro-
grams and activities that will enhance the lives of in-
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dividuals living with sickle cell disease and sickle cell 
disease trait. 
‘‘(h) REQUEST FOR INFORMATION.—Not later than 
180 days after the date of enactment of the Sickle Cell 
Disease Treatment Centers Act of 2024, and in advance 
of each new grant cycle thereafter, the Secretary shall 
publish in the Federal Register a request for information 
seeking feedback from stakeholders on— 
‘‘(1) best practices with respect to the establish-
ment and implementation of Sickle Cell Disease 
Treatment Centers; and 
‘‘(2) any other information that the Secretary 
may require. 
‘‘(i) REPORT TO CONGRESS.— 
‘‘(1) IN
GENERAL.—Not later than 3 years 
after the date of the enactment of the Sickle Cell 
Disease Treatment Centers Act of 2024 and every 5 
years thereafter, the Secretary shall submit to the 
Committee on Health, Education, Labor, and Pen-
sions and the Committee on Appropriations of the 
Senate and the Committee on Energy and Com-
merce and the Committee on Appropriations of the 
House of Representatives a report on the impact of 
the Sickle Cell Disease Treatment Centers estab-
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lished under this section on health outcomes for 
sickle cell disease patients. 
‘‘(2) REPORT
ELEMENTS.—The report de-
scribed in this section shall include— 
‘‘(A) a summary and description of eligible 
entities operating a hub-and-spoke system that 
are receiving grant funds under this section; 
‘‘(B) information about the specific activi-
ties supported by grant funds awarded under 
this section with respect to each eligible entity; 
‘‘(C) the number of sickle cell disease pa-
tients served by grant programs funded under 
this section and demographic information about 
those patients, including race, sex, gender, geo-
graphic location, and age; and 
‘‘(D) information about patient experiences 
with the hub-and-spoke system and community- 
based organizations. 
‘‘(j) SUPPLEMENT, NOT SUPPLANT.—The activities 
under this section shall supplement, not supplant, other-
wise authorized activities of the Department of Health and 
Human Services relating to sickle cell disease. 
‘‘(k) AUTHORIZATION OF APPROPRIATIONS.— 
‘‘(1) IN GENERAL.—To carry out this section, 
there are authorized to be appropriated such sums 
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as may be necessary for fiscal year 2025 and each 
fiscal year thereafter. 
‘‘(2) ALLOCATION
TO
ACTIVITIES.—Of the 
amount appropriated under paragraph (1) for a fis-
cal year— 
‘‘(A) 70 percent may be awarded to eligible 
entities for purposes of supporting the activities 
of hub and spoke networks that are a part of 
such eligible entities; 
‘‘(B) 20 percent may be awarded to eligible 
entities for purposes of supporting the activities 
of community-based organizations that are a 
part of such eligible entities; 
‘‘(C) 5 percent may be used for the estab-
lishment and maintenance of the National Sick-
le Cell Disease Coordinating Center described 
in subsection (f); and 
‘‘(D) 5 percent may be used for the activi-
ties of the Sickle Cell Data Collection program 
of the Centers for Disease Control and Preven-
tion described in subsection (g).’’. 
Æ 
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