Sickle Cell Advancement and Equity in Research Act (SCAR Act)

Championing Innovation, Access, and a Cure for Sickle Cell Disease

Purpose:

To accelerate research, data collection, treatment innovation, and public health strategies focused on sickle cell disease (SCD)—a long-overlooked and underfunded genetic disorder disproportionately affecting Black Americans and underserved communities. This act will direct federal funding, oversight, and accountability to ensure that SCD receives the same level of attention as other rare diseases.

Background:

• Sickle cell disease affects more than 100,000 Americans, primarily of African, Middle Eastern, and Mediterranean descent.

• Federal funding for SCD lags far behind diseases like cystic fibrosis, despite affecting more people and causing higher levels of pain, hospitalization, and early death.

• Existing treatments are limited, with curative options like bone marrow transplants out of reach for most families.

Key Provisions:

1. National Sickle Cell Research Initiative (NSCRI)

• Direct the National Institutes of Health (NIH), in collaboration with the CDC and HHS, to expand funding specifically for:

  • Gene therapy and curative treatments

  • Early childhood interventions

  • Pain management innovations

  • Behavioral and mental health support for SCD patients

  • Clinical trials focused on racially and geographically diverse populations

2. Creation of a Sickle Cell Innovation Grant Program

• Administered by HHS, the grant will support:

  • University and biotech research labs

  • Community health organizations developing treatment access tools

  • Partnerships between hospitals and HBCUs to train a new generation of SCD researchers

3. Mandatory SCD Tracking & Data Transparency

• Require states to participate in a Sickle Cell National Registry that tracks:

  • Diagnosis rates

  • Treatment access and outcomes

  • Mortality trends

  • Patient-reported pain experiences and hospitalization rates

• Public dashboards must be updated annually to inform policymakers and community groups.

4. Equity in Research Accountability

• Require the NIH and CDC to submit a biennial report to Congress detailing:

  • Progress on SCD research goals and clinical trial recruitment

  • Treatment advances for Sickle Cell

  • Improvements in diagnosis and intervention

5. Awareness & Public Education Campaign

• Fund a nationwide awareness initiative via the Department of Health and Human Services targeting schools, healthcare providers, and employers to:

  • Combat stigma around SCD

  • Promote early screening

  • Educate about emergency care needs for people living with SCD

Why This Matters:

• Levels the playing field for a historically underfunded disease

• Speeds up treatment discovery through real investment in innovation

• Improves outcomes for disproportionately impacted communities

• Improves long-term care coordination and public health planning

• Puts the United States on track to lead in sickle cell care globally