Legislation Proposed to Fund Nationwide Treatment Center Network for SCD Care

Senator Cory Booker (D-N.J.), Senator Chris Van Hollen (D-Md.), Representative Barbara Lee (D-Calif.), and Representative Danny Davis (D-Ill.) introduced legislation on Thursday, Sept. 15, that would establish and fund a nationwide system of treatment centers for patients with sickle cell disease (SCD) and other heritable hemoglobinopathies. If passed in its current form, the Sickle Cell Disease Treatment Centers Act of 2022 would authorize $535 million in annual funding to support SCD treatment, research and education.

Seventy percent of the proposed funding would establish a hub-and-spoke network of major care centers partnered with smaller providers and community-based organizations to provide comprehensive care for patients with SCD or other hemoglobinopathies. This would include primary care, specialized care and mental health services; SCT testing and genetic counseling; and social work services and education on disease management.

Ten percent of the proposed funding would be used to establish a national coordinating center that would collaborate with Centers for Disease Control and Prevention to oversee the hub-and-spoke network and collect and distribute data, best practices, and other findings resulting from these grant-funded activities. The remaining funding would be appropriated for community based SCD organizations and nonprofits.

Van Hollen’s office released a fact sheet with additional information.