Bill > H5385

This bill mandates that the Executive Office of Health and Human Services, in conjunction with the Office of MassHealth, provide rapid whole genome sequencing, which is a comprehensive analysis of a person's entire genetic makeup, including non-coding DNA and mitochondrial DNA, to quickly identify genetic causes of disease, with preliminary results within 5 days and final results within 14 days. This service, which can include sequencing of the patient alone or with their parents, will be covered for Medicaid beneficiaries aged 21 and younger who have a serious, unexplained illness not caused by external factors like environmental exposure, infection, or trauma, and who are hospitalized in an intensive care or high-acuity pediatric unit. Coverage will be subject to medical necessity criteria, such as when a patient's symptoms suggest multiple potential genetic conditions, and timely diagnosis is crucial for treatment decisions, and the illness involves specific complex conditions like multiple organ system anomalies, genetic indicators in lab tests, severe metabolic issues, or unexplained severe symptoms. The genetic data obtained will be used primarily for patient diagnosis and treatment and will be protected under HIPAA (Health Insurance Portability and Accountability Act), which sets standards for health information privacy and security. The bill also requires the Division of Medical Assistance to establish a separate payment rate for this sequencing, distinct from existing hospital payment systems, and to notify hospitals of this change within 12 months of regulations being established.