Expressing support for the designation of June 19, 2025, as "World Sickle Cell Awareness Day" in order to increase public awareness across the United States and global community about sickle cell disease and the continued need for empirical research, early detection screenings, novel effective treatments leading to a cure, and preventative care programs with respect to complications from sickle cell anemia and conditions relating to sickle cell disease.
H. Res. 524 is a non-binding House resolution introduced to express support for designating June 19, 2025, as “World Sickle Cell Awareness Day.” The resolution aims to raise public awareness in the United States and globally about sickle cell disease (SCD) and to emphasize the ongoing need for empirical research, early detection screenings, new treatments that could lead to a cure, and preventative care to manage complications of SCD and related conditions. It outlines a set of goals and policy directions—primarily around equitable access to treatments, global and domestic policy coordination, and interagency cooperation—without creating new laws or funding obligations. Key elements include calls for equitable access to emerging SCD therapies (including gene- and cell-based approaches), creation of global policy solutions (in partnership with governments) to support newborn screening, therapies, and support services, and the formation of a Sickle Cell Disease Interagency Group to coordinate policy across major federal agencies. The resolution is intended to bolster awareness, reduce disparities in care, and address bias within U.S. and global healthcare systems.
Key Points
- 1The resolution designates June 19, 2025 as World Sickle Cell Awareness Day and supports related awareness and advocacy efforts to improve SCD outcomes.
- 2It commits to equitable access to new SCD treatments across economic, racial, and ethnic groups, with a focus on improving health outcomes for people living with SCD.
- 3It calls the Department of Health and Human Services to develop global policy solutions to support the worldwide SCD community, including local-government partnerships and domestic resources for newborn screening, therapies, and support services.
- 4It endorses removing barriers to equitable access to innovative SCD therapies (including cell, gene, and gene-editing therapies) within Medicare and Medicaid for the most vulnerable patients.
- 5It encourages activities and programs on World Sickle Cell Awareness Day to raise public knowledge about SCD traits, prevention, treatments, and patient services.
- 6It urges the President to establish a Sickle Cell Disease Interagency Group (involving HHS, VA, NIH, FDA, and CMS) to develop policies that ensure equitable access to innovative SCD therapies.
- 7It directs the interagency group to consider options that address access to potential future curative treatments and to confront bias faced by populations disproportionately affected by SCD in the United States and worldwide.