Sickle Cell Disease Comprehensive Care Act
The Sickle Cell Disease Comprehensive Care Act would amend the Medicaid program (title XIX of the Social Security Act) to let states create sickle cell disease–focused health homes. Starting January 1, 2026, states could submit a sickle cell disease–focused State Plan Amendment (SPA) to provide comprehensive, coordinated care for eligible individuals with sickle cell disease through a health home. The bill requires that enrollees in such health homes receive dental and vision services, imposes reporting requirements on states, and directs the federal government to publish best practices for implementing these health homes. It also establishes definitions for “eligible individual with sickle cell disease” and “sickle cell disease” to ensure the program targets the intended population. In short, the bill seeks to integrate medical, dental, and vision care for people with sickle cell disease within Medicaid through a new, disease-focused health home model, with federal guidance and state-level implementation starting in 2026.
Key Points
- 1Establishment of sickle cell disease–focused health homes: Beginning January 1, 2026, states may seek approval of a sickle cell disease–focused State Plan Amendment designed to provide health home services primarily to eligible individuals with sickle cell disease.
- 2Mandatory dental and vision coverage: States with a approved sickle cell disease–focused SPA must ensure that eligible individuals with sickle cell disease enrolled in the health home receive dental and vision services, regardless of existing comparability rules or whether the state otherwise covers these services for other Medicaid beneficiaries.
- 3Reporting requirements: For states operating a sickle cell disease health home, the state must submit a report (by the last day of the 8th fiscal-year quarter after the amendment is in effect) covering quality of care (with a focus on health outcomes), access to care, and total health care expenditures for eligible individuals with sickle cell disease served by the health home, using specified measures determined by the Secretary.
- 4Best practices: By June 30, 2026, the Secretary must publicly share best practices for designing and implementing a sickle cell disease–focused SPA, based on clinical guidelines and input from providers and patient advocacy groups.
- 5Definitions and scope: The bill defines an “eligible individual with sickle cell disease,” and “sickle cell disease,” and expands the health home framework to explicitly include sickle cell disease within the broader “chronic conditions” category and health home provisions.