Bill > HB2513

This bill, known as "Maddie's Law: The Rare Pediatric Disease Care and Protocol Protection Act", establishes comprehensive requirements for managing healthcare for children with rare or medically complex conditions. The legislation mandates that healthcare providers collaboratively develop and maintain an individualized care plan for each affected child, which must include clear emergency care instructions and be reviewed at least annually. Hospitals and emergency services providers must maintain logs of care plan adherence, document any protocol deviations, and report significant deviations within 24 hours to the child's primary specialist and hospital safety officer. The bill requires pediatric healthcare professionals to receive training on rare diseases and how to recognize high-risk conditions, and prohibits healthcare providers from retaliating against caregivers who advocate for proper care plan implementation. The Department of Health and Senior Services is empowered to audit healthcare providers for compliance and can order corrective action plans for violations. Healthcare providers are also encouraged to create a centralized registry of individualized care plans accessible to authorized professionals. If systemic failures occur that could have been avoided, hospital leadership must meet with the child's caregiver upon request. The law will become effective on March 1, 2027, and defines a rare or medically complex condition as affecting fewer than 200,000 individuals in the United States or having a high risk of acute deterioration as documented by a treating physician.

https://house.mo.gov/Bill.aspx?bill=HB2513&year=2026&code=R