Sickle Cell Appropriations Movement: #FundSickleCell

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In March of 2020, the House (Rep. Danny Davis and Rep. Butterfield) and Senate (Sen. Cory Booker and Sen Tim Scott) submitted appropriation requests for $25 million for the CDC Data Surveillance Program and $5.052 million for the SCD Demonstration program. To date, the funding has not been appropriated for the CDC Surveillance program from the SCD Treatment Act despite being signed into law in 2018.

There is time to request that these funds are appropriated for the 2021 Fiscal Year (FY 2021). The House has appropriated $3 million towards the CDC Data Surveillance Program and the Senate agrees. Now is the time to request that House members include and increase funding for the CDC Data Surveillance Program. 

The House and Senate appropriated $5.205 million for the SCD Demonstration Program. Now is the time to ensure that the House keeps this appropriation request.  The community has until December 11 to complete this task.

Sick Cells in partnership with Sickle Cell 101 is starting a #FundSickleCell to mobilize SCD patients and advocates across the country. Over the next month, we will share more details on the bill and funding requests, advocacy toolkits, and actions everyone can take to inform their federal legislators on why they need to fund SCD in the FY 2021 federal budget.


Purpose of the Funding

In their FY 2021 Congressional Justification, a high-level evaluation of the costs, needs, and reasoning for their programs, the CDC estimated the need for $25 million for the CDC Data Program and $5.052 million for the SCD Demonstration program in order to implement the SCD surveillance provision of the 2018 SCD Law. 

Potential Impact of $25M for the CDC: Data collection is necessary to improve national incidence and prevalence data, better identify health disparities, and evaluate strategies to improve quality of life and lower costs associated with treating the population.

Potential Impact of $5.052M for the SCD Demonstration Program: Continued program efforts will accelerate the identification and implementation of best practices and procedures for SCD care.



We’ve gathered the information so you don’t have to! Use our Legislative One-Pager as a guide when you meet with your Legislators and Congressmen. Use our State Advocay Map to find your own Legislators and Congressmen. See our other resources below for step-by-step guides for every step of the process!

Through our Ambassadors Program, Sick Cells has created step-by-step guides and resources to help you prepare for meeting with your legislators.



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