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Readout of HHS In-Person Sickle Cell Disease (SCD) Data Summit with Organizations Supporting a Coordinated Response to the Disease
HHS hosts discussion to highlight the Biden-Harris Administration's Commitment to Addressing Sickle Cell Disease
On Monday, June 5, U.S. Department of Health and Human Services (HHS) co-hosted the third Sickle Cell Disease (SCD) Data Registry Leaders’ Roundtable with the American Society of Hematology (ASH). The roundtable series focused on how federal and non-federal partners can leverage SCD data capture programs to improve data collection cohesion. These sessions build on secretarial roundtables in November 2021 and April 2022 that HHS held with SCD advocates, researchers, and providers.
HHS Secretary Xavier Becerra and Assistant Secretary for Health Admiral Rachel Levine opened the summit by thanking the leadership of HHS’ Federal Intergovernmental Working Group on SCD along with the various federal partners and agencies who are working continuously to address SCD. Secretary Becerra and Admiral Levine also reaffirmed HHS’ commitment to developing and accelerating the identification and implementation of innovative solutions to increase the quality of life for patients living with SCD. The group of federal and non-federal participants then discussed ways to maximize access to data, avoid programmatic redundancies, and reduce overall data burden regarding the response to SDC.
About 100,000 Americans currently live with SCD, the most common inherited blood disorder. This disease is costly; expenditures for patients with SCD are six times higher than non-SCD patients on Medicaid and 11 times higher than non-SCD patients with private insurance. African Americans are disproportionately affected by SCD, and all SCD patients experience challenges with access, quality, and affordability of care. The Biden-Harris Administration is committed to addressing sickle cell disease and working in collaboration between the federal government and non-federal partners to improve sickle cell disease outcomes.
The Biden-Harris Administration has taken historic steps to respond to SCD. In early 2022, the Administration re-established the Sickle Cell Disease Federal Intergovernmental Working Group and a high-level Steering Committee with HHS operating divisions leaders. Both groups convened for the first-time during April 2022 to develop tangible steps for the Department in the prioritization of SCD. Coordination between all HHS operating divisions will be critical to ensure that there are not duplicative efforts within specific areas.
In addition to HHS Secretary Xavier Becerra and Assistant Secretary for Health Admiral Dr. Rachel Levine, the following agencies and organizations were represented at the Roundtable:
HHS Federal Intergovernmental Working Group on SCD (OASH)
Office of the Assistant Secretary for Health (OASH)
Food and Drug Administration (FDA)
Centers for Disease Control and Prevention (CDC)
Health Resources and Services Administration (HRSA)
National Institutes of Health (NIH)
Centers for Medicare & Medicaid Services (CMS)
Office of the National Coordinator for Health Information Technology (ONC)
Office of Global Affairs (OGA)
American Society of Hematology (ASH)
Center for International Blood and Marrow Transplant Research (CIBMTR)
Globin Research Network for Data and Discovery (GRANDaD)
National Institute for Children's Health Quality (NICHQ)
Sickle Cell Disease Association of America (SCDAA)
For general media inquiries, please contact media@hhs.gov.
Content created by Assistant Secretary for Public Affairs (ASPA) Content last reviewed
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