HRES524-119

That the House of Representatives— supports the goals and ideals of World Sickle Cell Awareness Day; commits to ensuring equitable access to new sickle cell disease (referred to in this resolution as SCD) treatments by shining the light among all economic, racial, and ethnic groups to improve health outcomes for individuals living with SCD; calls on the Department of Health and Human Services to create global policy solutions aimed at providing support for the global community with respect to SCD and, in partnership with local governments, the domestic resources needed to provide access to newborn screening programs, therapeutic interventions, and support services with respect to SCD; supports eliminating barriers to equitable access to innovative SCD therapies, including cell, gene, and gene-editing therapies in the Medicare and Medicaid systems for the most vulnerable patients; encourages the people of the United States and the world to hold appropriate programs, events, and activities on World Sickle Cell Awareness Day to raise public awareness of SCD traits, preventative-care programs, treatments, and other patient services for those suffering from SCD, complications from SCD, and conditions relating to SCD; encourages the President to form a Sickle Cell Disease Interagency Group, which should include the Department of Health and Human Services, the Department of Veterans Affairs, the National Institutes of Health, the Food and Drug Administration, and the Centers for Medicare & Medicaid Services, to work toward policies that will support equitable and appropriate access to innovative SCD therapies; and with respect to the policies described in paragraph (6), urges the interagency group described in that paragraph to consider options that not only address access to potential future curative treatments for SCD, but also address the bias that the population most affected by SCD continues to face within the United States and global healthcare systems.