Bill > H1347

This bill establishes comprehensive measures to improve sickle cell disease care in Massachusetts through multiple key initiatives. First, it creates a Statewide Steering Committee on Sickle Cell Disease within the Department of Public Health, comprising representatives from various medical, educational, and community organizations, as well as patients and family members. The committee will develop partnerships, establish networks, create educational materials, identify funding sources, and investigate care standards. The bill also establishes a Sickle Cell Disease Detection and Education Program to promote screening, public education, and provide counseling and referral services, with grants available to approved organizations for outreach and support. Additionally, the bill mandates the creation of a comprehensive sickle cell disease registry to collect detailed epidemiological data, track patient information, and support research while maintaining patient confidentiality. For Medicaid managed care organizations, the bill requires the development of a quality strategy that includes improving disease identification, ensuring provider network capacity, implementing care coordination strategies, providing provider training, and establishing performance measures. The legislation aims to address healthcare disparities, improve access to care, and support individuals with sickle cell disease across various life stages, from newborn screening through adult care transitions.

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https://malegislature.gov/Bills/194/H1347