A house RESOLUTION

 

TO RECOGNIZE CONGENITAL HEART DISEASE, INCLUDING AORTIC ATRESIA, AS A CRITICAL PUBLIC HEALTH PRIORITY IN SOUTH CAROLINA AND TO URGE THE ESTABLISHMENT OF A COMPREHENSIVE, LIFELONG CARE FRAMEWORK FOR AFFECTED RESIDENTS.

 

Whereas, congenital heart disease (CHD) is the most common type of birth defect, and rare conditions such as aortic atresia, where the aortic valve fails to form in a fetus, require complex, multistage surgical interventions and specialized lifelong medical supervision; and

 

Whereas, aortic atresia frequently occurs in conjunction with other complex CHDs, including hypoplastic left heart syndrome, and requires coordinated, multidisciplinary treatment from infancy through adulthood; and

 

Whereas, South Carolina mandates newborn screening for critical congenital heart defects, an important life-saving measure that facilitates early detection, but does not establish a comprehensive system for long-term care and support; and

 

Whereas, South Carolina has established a Rare Disease Advisory Council (RDAC) to provide guidance on rare conditions, including congenital heart defects, yet no targeted statutory framework currently designates CHD as a distinct public health priority requiring coordinated, lifelong care infrastructure; and

 

Whereas, individuals born with complex CHD are living longer into adulthood and require ongoing access to specialized pediatric and adult congenital cardiology services, transition programs, and care coordination; and

 

Whereas, workforce shortages, geographic disparities in specialist availability, and reimbursement challenges create barriers to timely and affordable access to high-quality congenital heart care, particularly in rural and underserved communities; and

 

Whereas, strengthening research, provider training, insurance coverage standards, and care coordination for CHD would support families, improve health outcomes, and reduce long-term healthcare costs to the State; and

 

Whereas, the members of the South Carolina House of Representatives recognize CHD, including aortic atresia, as a significant and ongoing public health concern affecting families across this State and support the efforts to expand research, data collection, and actionable policy recommendations through collaboration with the South Carolina RDAC and relevant healthcare stakeholders to ensure accessible, coordinated, and sustainable care throughout the lifespan. Now, therefore,

 

Be it resolved by the House of Representatives:

 

That the members of the South Carolina House of Representatives, by this resolution, recognize congenital heart disease, including aortic atresia, as a critical public health priority in South Carolina and urge the establishment of a comprehensive, lifelong care framework for affected residents.

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