The proposed bill, known as "Maddie's Law: The Rare Pediatric Disease Care and Protocol Protection Act," aims to enhance the care and management of children with rare or medically complex conditions in Missouri. It introduces six new sections to Chapter 191 of the Revised Statutes of Missouri, which establish definitions for key terms such as "caregiver," "individualized care plan," and "protocol deviation." The bill mandates that health care providers collaborate to create and maintain an individualized care plan for each affected child, which must include emergency care instructions and be reviewed at least annually or after any hospitalization. Additionally, it requires hospitals and emergency services providers to log adherence to these care plans and report any significant protocol deviations. Furthermore, the bill empowers the Department of Health and Senior Services to audit compliance with these new provisions and enforce corrective action plans if violations are found. It also emphasizes the importance of training for pediatric health care professionals on rare diseases and encourages the establishment of a centralized registry for individualized care plans. Importantly, the bill prohibits retaliation against caregivers who advocate for adherence to care plans or report deviations, ensuring that caregivers can act in the best interest of the child without fear of repercussions. The provisions of this act are set to take effect on March 1, 2027.

Statutes affected:
Introduced (5089H.02): 191.273, 191.276, 191.279, 191.282, 191.285, 191.288