Advocacy Efforts Create Legislative Victory!

On December 18, 2018, S.2465 – The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018  – was signed into law by the President.

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The bill represents a commitment by the government to continue much-needed research geared towards increasing the understanding of prevalence, distribution, outcomes, and therapies associated with sickle cell disease (SCD). It also reauthorizes SCD prevention and treatment grants awarded by the Health Resources and Service Administration (HRSA), and it authorizes the Centers for Disease Control and Prevention to award SCD surveillance grants to states, academic institutions and non-profit organizations.

“It has been a long journey for the sickle cell community in getting the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 signed into law, but we did it” said SCDAA President and CEO Beverley Francis-Gibson. “We thank the President and the Congress for listening to the voices within the sickle cell community. Today, we proudly stand together knowing that this new law will benefit individuals and their families living with sickle cell disease, help us to better understand the prevalence and outcomes of SCD through research and to address the complex and diverse needs of the sickle cell community.”

Sickle Cell Disease Association of America, Inc. thanks Senator Tim Scott (R-SC) and Senator Cory Booker (D-NJ) for their leadership and for introducing the bill this year, and we thank the bill’s co-sponsors Senator Doug Jones (D-AL), Senator Bill Cassidy (R-LA), Senator Debbie Stabenow (D-MI), and Senator Elizabeth Warren (D-MA). SCDAA also thanks Congressman Danny Davis (D-IL), a long-time champion for the sickle cell community; Congressman Michael Burgess (R-TX); and Congressman G.K. Butterfield (D-NC) for supporting this bill in the U.S. House of Representatives.

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