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Urge Your Elected Officials to Provide Dedicated Funding for SCD Data Collection

Earlier this summer, the House of Representatives passed its version of the Labor, Health and Human Services, Education, and Related Agencies appropriations bill for fiscal year (FY) 2020, which included $2 million in dedicated funding for a sickle cell disease (SCD) data collection program within the Centers for Disease Control and Prevention (CDC). ASH is now working hard to ensure funding for this program is included in the final version of the bill which both chambers will need to approve following conference committee.

Currently, the CDC operates a population-based surveillance system to collect and analyze longitudinal data about people living with SCD in the United States.  However, due to limited funding, the program is only implemented in a handful of states.  Thanks to your advocacy efforts, Congress authorized the CDC to expand the data collection program by passing the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2018 (P.L. 115—327) last December.  We now need Congress to provide dedicated federal funding to implement the expansion to additional states, with the goal of covering the majority of the U.S. SCD population over the next five years.

YOU can help spread this message by sending an email to your legislators in support of dedicated funding in FY 2020 for the SCD data collection program.  Simply click "Take Action" below, enter your contact information on the next page, and click “Submit Message.”  Sending a message will not take much time, but it can have a big impact.

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