Us Congress House Bill HR514

Us Congress 2023-2024 Regular Session

• Introduced: 6/15/23
• Refer: 6/15/23
• Refer: 6/16/23

Caption

Expressing support for the designation of June 19, 2023, as "World Sickle Cell Awareness Day" in order to increase public alertness across the United States and global community about sickle cell disease, the continued need for empirical research, early detection screenings for sickle cell trait carriers, novel effective treatments leading to a cure, and preventative care programs with respect to complications from sickle cell anemia and conditions related to sickle cell disease.

Impact

The resolution highlights the crucial need for equitable access to treatments and supportive resources for those afflicted by sickle cell disease, particularly among economically and racially disadvantaged groups. It calls upon various government entities, especially the Department of Health and Human Services, to support global policy solutions that can facilitate access to newborn screenings, therapeutic interventions, and community-based support services. Furthermore, the resolution underscores the urgency for innovative therapies and the elimination of barriers that hinder adequate healthcare access for those most in need.

Summary

House Resolution 514 expresses support for the designation of June 19, 2023, as 'World Sickle Cell Awareness Day.' This day aims to enhance public awareness in the United States and globally regarding sickle cell disease (SCD) and emphasizes the continuous necessity for empirical research, early detection screenings, novel treatments, and preventative care regarding complications associated with sickle cell disease. The resolution acknowledges the challenges faced by individuals with this genetic condition and the importance of improving their quality of life through increased awareness and resources.

Contention

While generally supportive, some may argue that the resolution could do more than merely express awareness; critics could suggest that it lacks actionable commitments to funding or direct policy changes that guarantee healthcare improvements for sickle cell patients. Given that current therapeutic options remain limited, with only four FDA-approved treatments since 2017, continued advocacy and legislative action will be necessary to address and overcome these healthcare disparities effectively. Furthermore, the resolution calls for the formation of a Sickle Cell Disease Interagency Cabinet, which could imply a need for coordinated federal efforts, rejecting a fragmented approach to addressing this public health issue.