2024-28558. Public Comment Request: Request for Information Regarding HRSA Sickle Cell Disease Programs

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Department of Health and Human Services

Health Resources and Services Administration

AGENCY:

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

ACTION:

Notice of request for public comment.

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 [e-mail]. 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; [e-mail] or call [phone].

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. ( print 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.