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[Federal Register Volume 89, Number 235 (Friday, December 6, 2024)]
[Notices]
[Pages 97013-97014]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2024-28558]

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DEPARTMENT OF HEALTH AND HUMAN SERVICES

Health Resources and Services Administration

Public Comment Request: Request for Information Regarding HRSA 
Sickle Cell Disease Programs

AGENCY: Health Resources and Services Administration (HRSA), Department 
of Health and Human Services.

ACTION: Notice of request for public comment.

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SUMMARY: HRSA's Maternal and Child Health Bureau Sickle Cell Disease 
(SCD) Programs are requesting input from the public to inform future 
SCD program development.

DATES: Submit comments no later than January 6, 2025.

ADDRESSES: Submit electronic comments to [email protected]. Please 
submit your response only one time.

FOR FURTHER INFORMATION CONTACT: Oriana Sanchez, Public Health Analyst, 
Maternal and Child Health Bureau, HRSA, 5600 Fishers Lane, Rockville, 
Maryland 20857; [email protected] or call (347) 415-1458.

SUPPLEMENTARY INFORMATION: SCD is a group of inherited red blood cell 
disorders affecting an estimated 100,000 individuals in the United 
States. The Centers for Disease Control and Prevention report that SCD 
is a lifelong condition disproportionately affecting Black (1 of every 
365 births) and Hispanic Americans (1 of every 16,300 births) with 
cases also occurring in individuals of Mediterranean, Middle Eastern, 
and Asian descent. SCD causes the body to produce red blood cells that 
are crescent shaped which impedes blood flow and cause anemia, severe 
pain, organ damage and other complications. Without access to 
comprehensive and routine services, life expectancy is greatly reduced 
for individuals with SCD. HRSA currently funds a portfolio of three 
coordinated programs with several recipients to improve outcomes of 
individuals with SCD and their families: the SCD Newborn Screening 
Follow-up Program (authorized by 42 U.S.C. 701(a)(2) (sec. 501(a)(2) of 
the Social Security Act)) funds 25 community-based organizations, the 
SCD Treatment Demonstration Program (authorized by 42 U.S.C. 300b-5(b) 
(sec. 1106(b) of the Public Health Service Act)) funds five regional 
organizations, and one Hemoglobinopathies National Coordinating Center 
(authorized by 42 U.S.C. 300b-5(b) (sec. 1106(b) of the Public Health 
Service Act).
    Together the programs strengthen the SCD system of care and support 
by (1) educating patients, families, and clinicians to improve 
knowledge and capacities; (2) linking individuals and families to 
evidence-based care; and (3) fostering partnerships between clinicians, 
community organizations, and other stakeholders to improve the ability 
to deliver coordinated, comprehensive care across the lifespan. HRSA's 
SCD portfolio seeks to support and strengthen regional networks of SCD 
care, education, and social services across the United States. More 
information about the HRSA SCD programs is available online at: https://mchb.hrsa.gov/programs-impact/programs/sickle-cell.

Responses

    HRSA is seeking responses that address the following questions. A 
response to each question is not required. When drafting responses, 
highlight strategies that HRSA should consider or prioritize to meet 
the needs of individuals with SCD and their families within the United 
States.

[[Page 97014]]

    1. What are the best ways to improve the quality of life of 
individuals living with SCD?
    2. What strategies or best practices are needed to ensure 
individuals with SCD receive comprehensive evidence-based health care? 
If possible, describe different strategies needed for children and for 
adults in both healthcare (e.g., clinics, hospitals) and non-healthcare 
settings (e.g., education, housing, transportation).
    3. What are the barriers to ensuring infants identified with SCD 
through newborn screening are receiving appropriate follow-up care? 
What strategies or practices best address these barriers?
    4. What are the barriers to successful transition from pediatric to 
adult serving systems? What strategies are available for individuals 
with SCD to receive evidence-based, comprehensive care as they 
transition into adulthood (e.g., in clinics, hospitals)? What 
strategies or programs (e.g., community health worker programs) have 
successfully transitioned individuals with SCD in non-health settings 
(e.g., education, employment, and living situations)?
    5. What are the challenges to improving the systems of care that 
support individuals with SCD and their families across the lifespan 
more broadly? Please share strategies that can bridge the gaps between 
systems that address healthcare (e.g., clinics, hospitals) and systems 
that address social determinants of health (e.g., education, housing, 
transportation)?
    Respondents can also provide additional comments or recommendations 
that are not specifically linked to the questions above. All responses 
may, but are not required to, identify the individual's name, address, 
email, telephone number, professional or organizational affiliation, 
background or area of expertise (e.g., program participant, family 
member, clinician, public health worker, researcher, HRSA SCD grantee), 
and topic/subject matter. Information obtained as a result of this 
request for information (RFI) may be used by HRSA for program planning. 
Comments in response to this RFI may be made publicly available, so 
respondents should bear this in mind when making comments. HRSA will 
not respond to any individual comments.

Special Note to Commenters

    Whenever possible, respondents are asked to draw their responses 
from objective, empirical, and actionable evidence and to cite this 
evidence within their responses. The information obtained through this 
RFI may help inform the next iteration of the HRSA SCD portfolio of 
investments. This RFI is issued solely for information and planning 
purposes; it does not constitute a Request for Proposal, applications, 
proposal abstracts, or quotations. This RFI does not commit the U.S. 
Government to contract for any supplies or services or make a grant or 
cooperative agreement award. Further, HRSA is not seeking proposals 
through this RFI and will not accept unsolicited proposals. HRSA will 
not respond to questions about the policy issues raised in this RFI. 
Responders are advised that the U.S. Government will not pay for any 
information or administrative costs incurred in response to this RFI; 
all costs associated with responding to this RFI will be solely at the 
interested party's expense. Not responding to this RFI does not 
preclude participation in any future procurement or program, if 
conducted.

Maria G. Button,
Director, Executive Secretariat.
[FR Doc. 2024-28558 Filed 12-5-24; 8:45 am]
BILLING CODE 4165-15-P
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