S.2465, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2018

In February 2018, the sickle cell community celebrated with the announcement of two legislative victories in Congress. First, the U.S. House of Representatives passed H.R. 2410 on February 26, 2018, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act, which was introduced on May 11, 2017, by Rep. Danny Davis (D-IL). Then, on February 28, 2018, Senator Cory Booker (D-NJ) and Senator Tim Scott (R-SC) introduced S.2465, the Senate companion bill to H.R. 2410 into the Senate.

About HR 2410

H.R. 2410 would authorize the Secretary of Health and Human Services to conduct surveillance and collect data on the prevalence of sickle cell disease (SCD). In addition, the bill would authorize the Secretary to develop public health initiatives that support community-based organizations in education activities and to support regional and state health departments in testing to identify SCD.

Click here to read the key points of the legislation.

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NEW S. 2465 Advocacy Toolkit

The toolkit was created in collaboration with Sick Cells, Sickle Cell 101, The SickleCellForum#BoldLipsforSickleCell, the EveryLife Foundation, and Sickle Cell Disease Association of America (SCDAA).

Click HERE to access it.

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Key Talking Points about S.2465

  • S.2465 – Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018- was introduced on February 28, 2018 by Sen Tim Scott [R-SC] and cosponsored by Sen. Booker, Cory A. [D-NJ]; Sen. Jones, Doug [D-AL]; Sen. Cassidy, Bill [R-LA]; Sen. Stabenow, Debbie [D-MI]; and Sen. Warren, Elizabeth [D-MA]
  • S.2465 represents a commitment by the government to continue much-needed research geared towards increasing understanding of prevalence, distribution, outcomes, and therapies associated with SCD
    • The legislation reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA)
    • Authorizes the Centers for Disease Control and Prevention (CDC) to award SCD surveillance grants to states, academic institutions, and non-profit organizations
  • It is imperative that the Senate HELP committee take action to move the bill towards a floor vote with the ultimate goal of cohesive passage by both Congressional houses and signature by the President into law