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). 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 in the Senate. The Senate companion bill incorporated changes to include “other heritable blood disorders” in addition to sickle cell disease. The bill passed the Senate on October 11, 2018.
The bill moved back to the House for a final vote before it can become law. It’s vital that the sickle cell disease community contact their House members and ask them to “consider S.2465 for a vote this year.” The new changes to the bill requires the House to vote on it again.
About the bill
S. 2465 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.
Key Talking Points about S.2465
● S. 2465 – Sickle Cell Disease and Other Heritable Blood Disorders 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 important that the House vote on the bill this year. The ultimate goal is the passage by both Congressional houses and signed into law by the President.