Bill > HB1589

This bill modifies provisions related to medical testing for pediatric rare diseases by introducing several key changes. It expands the definition of "pediatric rare diseases" to include genetic conditions affecting fewer than 200,000 individuals in the United States, and establishes new requirements for genetic screening and testing. The bill requires the Missouri Department of Health and Senior Services to conduct an annual public comment period on best practices for newborn screening of pediatric rare diseases and to prepare an annual report for the governor and general assembly. Additionally, the bill adds provisions to the MO HealthNet program to cover genetic screening, including rapid whole genome sequencing for high-acuity inpatient pediatric patients under 22 years old with complex or unexplained illnesses, and biomarker testing in outpatient settings. The legislation also requires health benefit plans to provide coverage for biomarker testing for diagnosis, treatment, and monitoring of pediatric rare diseases, with specific criteria for determining medical necessity, and mandates that such coverage include genetic counseling. The new provisions aim to improve early detection and management of rare genetic conditions in children by expanding access to advanced genetic testing and support services.

https://house.mo.gov/Bill.aspx?bill=HB1589&year=2025&code=R