S.2465 Has Passed!

On December 10, 2018, S.2465 – The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018  – was passed by the Congress and signed by the President and has become law.

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 is amazing what can happen when our collective voices sound together to affect positive change,” said SCDAA President and CEO Beverley Francis-Gibson. “We are grateful for this legislative victory and to all of the individuals living with SCD and their families for their strength and for their efforts to be heard. The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 marks another step forward in our collective efforts to better understand the prevalence and outcomes of SCD through research and to address the complex 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 on February 28, 2018, 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).

Information taken from: https://www.sicklecelldisease.org/advocacy/s-2465-has-passed/

Read more at: https://www.congress.gov/bill/115th-congress/senate-bill/2465

What is the History of the the Sickle Cell Treatment Act? 

In 2017, Rep. Danny Davis introduced House Bill H.R. 2465 the Sickle Cell Disease Treatment Act of 2017, to the House of Representatives. The bill passed the House to the Senate on February 26, 2018.

In the Senate, Senators Cory Booker and Tim Scott introduced the companion bill S. 2465, the Sickle Cell Treatment Act of 2018. To pass the Senate, Senators Booker and Scott added language: “heritable blood disorders.” The bill passed congress in December 10, 2018 and after being signed by the President, has become law.

Does the New Language Hurt Sickle Cell Disease?

No! The addition of the new language helped the bill move through the Senate. In fact, this is the fastest this bill has ever moved through Congress. It is very rare that a bill will be signed into law if it only supports one disease – so this is amazing progress.

SCDAA, the American Society of Hematology, and many other parties worked hard to ensure the bill would still focus on sickle cell disease.