Caring for ACHD in a market-driven society

Our cardiology community is responding to the growing number of emerging adults with often complex congenital heart disease. Collaborations are springing up between adult and pediatric cardiologists, advanced practice nurses, patients, and families to address the health care, research, and advocacy needs for this population. Workforce and institutional needs are being defined and research collaborations are being formed. Meanwhile, health care reform is evolving through fits and starts with little predictability regarding its medium and long-term impact. Since ultimately finances trump philosophy, it is essential that we understand the financial underpinnings of healthcare delivery to patients with this unique model of chronic disease in order to carry out these plans. What is unique about this population with chronic disease? The most obvious feature is that they have the potential of contributing to the GDP for 40+ years. Another is that for the more complex lesions, society has already invested a considerable amount to achieve survival into adult life. Finally, the period of early adulthood is relatively uneventful in terms of complications and resource utilization compared with early childhood and later adult life. Thus, the basic needs to maintain cardiovascular status and prevent secondary disability may be modest in comparison with treating some of the severe consequences of their disease, such as poorly managed valve regurgitation or arrhythmia that eventually requires costly solutions such as transplantation. It is important, therefore, to define the resource requirements and potential health outcomes of a healthcare system that would be designed for this population.