Driving Federal Legislation for Sickle Cell Equity
SCCM’s federal level advocacy is anchored in one conviction: every sickle cell warrior—no matter their ZIP code—deserves equitable access to comprehensive care, innovative therapies, and a strong social support safety net. To advance that goal, we translate the lived experiences of patients and caregivers into actionable policy priorities on Capitol Hill.
Our Legislative Priorities
Access to Safe, Equitable Care
A guarantees that every sickle cell warrior—no matter their zip code, insurance status, or background—can access comprehensive, bias free care. Sets national quality standards, expands HRSA and Medicaid coverage for specialized treatments, funds new SCD centers in underserved areas, and mandates provider training to eliminate racial health disparities.
National Registry for Sickle Cell Disease
A secure, federally supported platform that collects and links clinical, genetic, and quality of life data from every person living with sickle cell disease in the United States—giving researchers, clinicians, and policymakers the real time insights they need to track outcomes, close care gaps, accelerate cures, and ensure no warrior is left unseen.
Affordable Universal Cure for All Sickle Cell Warriors
A nationwide policy agenda that accelerates breakthrough gene based treatments, expands NIH and HRSA funding, and mandates full Medicare Medicaid coverage—so every sickle cell warrior, regardless of income or zip code, can access a safe, one time curative therapy without financial hardship.
Speak Up, Act Now
Stand with Us:
Sickle Cell Advocacy Day 2026
Join us in 2026–2027 at the Nation’s Capital—virtually or in person—as we advocate for federal policies that support the sickle cell community. All ages and allies are welcome. Let’s unite for meaningful change!
Center – Sen. Chris Van Hollen
Senator Van Hollen Visits UM Capital Region Medical Center to Support Sickle Cell Patients During a Community Health Fair and Site Visit.
Why your voice matters
Each year, we head to Washington, D.C. to meet your senators and representative and secure vital funding and support for sickle cell warriors and caregivers—will you stand with us?
Amplify Your Voice:
Amplify Your Voice:
Amplify Your Voice:
Amplify Your Voice:
Coming Soon!!
Are you a high school or university student passionate about government, policy, sickle cell advocacy, and making a real impact in your community?
Scripting Change — Youth Transforming Maryland SCD Policy Initiative is launching soon! Applications will open shortly—sign up now to be the first to receive updates and application details.
Get Informed • Take Action • Advocate. Join the Fight — Sign for Updates
