H.R. 5178 — Sickle Cell Disease Comprehensive Care Act

This section expands the Medicaid health home program—currently available to individuals with two or more chronic conditions—to eligible individuals with sickle cell disease beginning January 1, 2026 (i.e., those eligible for Medicaid who have sickle cell disease, as defined via newborn screening or genetic test, regardless of prior health home enrollment). (As background, the program provides coordinated care, including comprehensive treatment planning and referrals, to improve health outcomes and reduce costs for enrollees.) It further (1) authorizes the Centers for Medicare & Medicaid Services (CMS) to approve state plan amendments (SPAs) providing health home services primarily to such individuals (sickle cell disease-focused SPAs); (2) requires states with approved sickle cell disease-focused SPAs to furnish dental and vision services to enrollees irrespective of Medicaid comparability requirements or coverage for other beneficiaries; (3) requires such states to report to CMS by the end of the eighth fiscal year quarter following SPA approval on enrollees' care quality (emphasizing recovery outcomes), access, and expenditures using CMS-specified measures; (4) directs CMS to publish best practices for sickle cell disease-focused SPAs by June 30, 2026, based on clinical guidelines and consultations with providers and advocates; and (5) makes conforming changes to payment provisions.