A resolution 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.
This Senate resolution expresses formal support for designating June 19, 2025, as World Sickle Cell Awareness Day and outlines policy aspirations related to sickle cell disease (SCD). It emphasizes raising public awareness in the U.S. and globally, and highlights the ongoing need for empirical research, early detection screenings, new and accessible treatments (including potential curative approaches), and robust preventative care for SCD and related conditions. While it signals policy priorities and interagency coordination, the measure is non-binding and does not authorize new spending; its main effect is to articulate congressional intent and to guide and encourage actions by federal agencies, healthcare providers, and the broader public. Key elements include a commitment to equitable access to SCD treatments, global and domestic policy efforts to improve newborn screening and care, elimination of barriers to innovative therapies (including cell and gene therapies within Medicare/Medicaid for vulnerable patients), the creation of an interagency SCD group, and encouragement of awareness programs and events on World Sickle Cell Awareness Day. The resolution also underscores continuing scientific and public health efforts to reduce mortality and improve quality of life for people affected by SCD.
Key Points
- 1Supports the goals and ideals of World Sickle Cell Awareness Day and endorses the 2025 theme focused on global action and local impact to empower self-advocacy and improve outcomes for people with SCD and their families.
- 2Commits to ensuring equitable access to new sickle cell therapies across economic, racial, and ethnic groups to improve health outcomes for individuals living with SCD.
- 3Calls on the Department of Health and Human Services to develop global policy solutions that support SCD patients worldwide and to work with local governments to provide resources for newborn screening, therapies, and support services.
- 4Supports eliminating barriers to equitable access to innovative SCD therapies, including cell, gene, and gene-editing therapies, within Medicare and Medicaid for the most vulnerable patients.
- 5Encourages the President to establish a Sickle Cell Disease Interagency Group (involving HHS, VA, NIH, FDA, and CMS) to develop policies that promote equitable access to therapies and to address bias and discrimination faced by SCD-affected populations in U.S. and global health systems.