Advocacy Days provide opportunities for patients and caregivers affected by sickle cell disease to learn how to advocate for issues that are important to them. Participants learn about the key legislative issues that are important to individuals living with SCD and their families, including promoting stable funding for research, better health care access and increased education and awareness for the sickle cell community throughout the country. Stay tuned for more details.
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SCDAA’s 2024 Advocacy Days were held on May 8-9 in Washington, D.C.!
SCDAA’s in-person Advocacy Days were a huge success! On May 8 and 9, representatives from 13 SCDAA member organizations across 11 different states traveled to Washington, D.C., to meet with members of Congress and their staff to talk about issues impacting the SCD community. Attendees, including sickle cell warriors, met with 23 offices and talked about the importance of SCD community-based organizations (CBOs), the services they provide and why they are a trusted source of information and a lifeline to the SCD community. Attendees also had the opportunity to provide staff with firsthand information on what it is like to live with SCD, the intensity of pain crises and the challenges faced in accessing care from providers who often don’t understand SCD. We asked for support on three pieces of legislation:
- The Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 3884/S.1852), which would reauthorize HRSA’s Sickle Cell Disease Treatment Demonstration Program from 2024 through 2028.
- The Sickle Cell Care Expansion Act (H.R. 3100/S.1423), which would authorize loan repayment and scholarships under the National Health Service Corps to physicians that care for patients and participate in SCD research.
- The Sickle Cell Disease Comprehensive Care Act (H.R. 7432), which would allow states to establish health homes for Medicaid beneficiaries with sickle cell disease.
As a result of SCDAA’s advocacy, Representative Jonathan Jackson, a Democrat from Illinois’ first district, cosponsored H.R. 3100. We thank all of those who attended for helping to make these events a success. We are already looking forward to 2025.
