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119-hres-524119th Congress

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.

Sponsored By: Representative Davis, Danny K. [D-IL-7]

Introduced

Summary

This resolution would designate June 19, 2025 as World Sickle Cell Awareness Day and promote equitable access to sickle cell disease treatments and wider public awareness of the condition and its screening needs. It stresses the need for research, newborn screening, new therapies, and programs that prevent and manage complications from sickle cell disease.

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  • Families and people with sickle cell disease: Would push for expanded newborn screening and outreach to improve diagnosis and care. The resolution notes about 100,000 people with sickle cell disease in the United States and 1 to 3 million people with sickle cell trait.
  • Medicare and Medicaid beneficiaries: Would call for removing barriers in Medicare and Medicaid to cell, gene, and gene-editing therapies so vulnerable patients can access innovative treatments.
  • Federal health agencies and researchers: Would ask the Department of Health and Human Services to create global policy solutions and would encourage the President to form an interagency group with HHS, the Department of Veterans Affairs, NIH, FDA, and CMS to coordinate access and policy.
  • Global and low-resource communities: Would highlight worldwide gaps in survival and care, noting up to 90 percent of children with sickle cell disease in resource-poor countries do not reach adulthood and about 1,000 children with sickle cell disease are born each day in Africa.
  • Public awareness and advocacy: Would encourage national and international events on the designated day to boost education, self-advocacy, and prevention programs.

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Bill Overview

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Sponsors & CoSponsors

Sponsor

Davis, Danny K. [D-IL-7]

IL • D

Cosponsors

  • Rep. Sewell, Terri A. [D-AL-7]

    AL • D

    Sponsored 6/20/2025

  • Rep. Vindman, Eugene Simon [D-VA-7]

    VA • D

    Sponsored 10/24/2025

Roll Call Votes

No roll call votes available for this bill.

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