The bill H. 5425, introduced in the South Carolina House of Representatives, aims to recognize congenital heart disease (CHD), particularly aortic atresia, as a critical public health priority in the state. It highlights the complexities of CHD, which is the most common type of birth defect, and emphasizes the need for coordinated, multidisciplinary treatment from infancy through adulthood. The resolution points out that while South Carolina mandates newborn screening for critical congenital heart defects, there is currently no comprehensive system in place for long-term care and support for individuals affected by these conditions.

The resolution calls for the establishment of a comprehensive, lifelong care framework for residents with CHD, addressing the barriers to access such as workforce shortages, geographic disparities, and reimbursement challenges. It also advocates for strengthening research, provider training, and insurance coverage standards to improve health outcomes and reduce long-term healthcare costs. The members of the South Carolina House of Representatives express their commitment to collaborating with the Rare Disease Advisory Council and relevant healthcare stakeholders to ensure accessible and sustainable care for individuals with congenital heart disease throughout their lives.