[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[H.R. 9872 Introduced in House (IH)]
<DOC>
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) introduced the following bill; which was referred to the
Committee on Energy 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 Representatives 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''.
SEC. 2. ESTABLISHMENT OF SICKLE CELL DISEASE AND OTHER HERITABLE
HEMOGLOBINOPATHIES TREATMENT CENTERS.
Subpart I of part D of title III of the Public Health Service Act
(42 U.S.C. 254b et seq.) is amended by inserting after section 330P (42
U.S.C. 254c-22) the following:
``SEC. 330Q. SICKLE CELL DISEASE AND OTHER HERITABLE HEMOGLOBINOPATHIES
TREATMENT CENTERS.
``(a) Definitions.--In this section:
``(1) Community-based organization.--The term `community-
based organization' means a community-based nonprofit
organization.
``(2) Hub-and-spoke network.--The term `hub-and-spoke
network' means a system for delivery of health care services--
``(A) in which a medical hub identifies and manages
a medical spoke or network of spokes, to provide
comprehensive sickle cell disease care;
``(B) in which such entities serving as spokes--
``(i) may provide sickle cell disease care
services; and
``(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 outreach 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 disease
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-certified hematologist, infusion
capability, telehealth capability, genetic counseling,
access to home care, and a pharmacy;
``(B) has experience serving individuals living
with sickle cell disease or other hemoglobinopathies;
``(C) follows consensus-based clinical practice
guidelines; and
``(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 entity--
``(A) that provides health care services,
including--
``(i) a Federally-qualified health center,
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 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 Control and Prevention, including the
collection of health outcomes and associated complications
reported 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 foreign-born patients; and
``(7) conducting significant public health awareness and
education activities with respect to sickle cell disease and
sickle cell trait.
``(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, clinic, or
university health center; and
``(B) at least 1 spoke working in partnership with
the medical hub; and
``(2) at least 1 community-based nonprofit organization
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 sickle cell
disease treatment guidelines, as identified by the
Secretary.
``(C) Educating health care providers on sickle
cell disease treatment standards and protocols.
``(D) Providing integrated care management, which
may include--
``(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 expert 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 patients with
sickle cell disease, trait, or other
hemoglobinopathies.
``(I) Providing telehealth appointments to patients
when appropriate and facilitating access to telehealth
services for sickle cell disease patients to the extent
feasible.
``(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 coordination with one or more
community-based organizations.
``(L) Collecting and distributing data as required
by the National Sickle Cell Disease Coordinating Center
established under subsection (f) or otherwise required
by the Secretary.
``(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 require.
``(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, individuals
with sickle cell trait, sickle cell disease patients,
caregivers, and health care providers.
``(B) Providing support in addressing social
determinants of health, such as food insecurity,
housing insecurity, and access to education and
transportation.
``(C) Providing social work services or community
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
individuals with sickle cell trait that increase the
likelihood of having a child with sickle cell disease,
including through coordination with a genetic
counselor.
``(E) Engaging in quality improvement with respect
to standards of care or health and quality of life
outcomes among sickle cell disease 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 disease
patients.
``(B) Providing standards of care as developed in
coordination with the medical hub.
``(C) Providing primary care services, genetic
counseling, or specialty care.
``(D) Providing telehealth appointments, as
appropriate.
``(E) Providing medical or surgical treatment.
``(F) Implementing individual care plans.
``(G) Providing social work services or community
health worker services in coordination with one or more
community-based organizations.
``(H) Collecting and distributing data as required
by the National Sickle Cell Disease Coordinating Center
established under subsection (f).
``(4) Additional uses of funds.--In addition 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 involved, the State
plan under title XIX of the 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 organizations and
other nonprofit entities;
``(B) to assist sickle cell disease patients with
accessing appropriate health insurance, including--
``(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
patients know their rights with insurance
programs;
``(C) to facilitate access to telehealth services
for sickle cell disease patients and individuals with
sickle cell trait, to the extent feasible;
``(D) to fund evidence-based programs that provide
education to health care providers, teachers and school
personnel, and correctional institutional personnel, on
the care of individuals with sickle cell disease or
trait in health care settings and other appropriate
settings, including 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 application 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 described in
subsection (c).
``(2) Geographic distribution.--The Secretary shall award
grants under this section, to the extent practicable, to
eligible entities, with a focus on regions where a
disproportionate number of patients with sickle cell disease,
individuals with sickle cell trait, or other heritable
hemoglobinopathy patients per capita reside, and to eligible
entities nationwide so that patients can access more
comprehensive 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 institution
under section 322 of the Higher Education Act of 1965
(20 U.S.C. 1061)) or minority serving institution
(defined as an eligible institution under section 371
of such Act (20 U.S.C. 1067q)) that has a medical
school, nursing school, nurse practitioner or physician
assistant 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 Coordinating Center.--
``(1) In general.--The Secretary shall establish, or enter
a cooperative agreement with an entity to establish, the
National Sickle Cell Disease Coordinating 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 Disease
Coordinating Center shall carry out each of the following
activities:
``(A) Advise the Secretary on the design and
implementation of, and coordinate the infrastructure
of, the Sickle Cell Disease Treatment Centers
established under subsection (b), including with
respect to administrative requirements 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 comprehensive 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 patients and
routinely update a national needs assessment to improve
care for individuals impacted by sickle cell disease.
``(D) Coordinate with hub-and-spoke networks,
patients, researchers, and health care providers to
maintain a comprehensive sickle cell research,
treatment, and national care strategy.
``(E) Establish a rotating panel of stakeholders,
including health care providers, patients, individuals
impacted by sickle cell disease, allied health
professionals, care coordinators, 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 individuals 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, a