The challenges and difficulties imposed by chronic diseases is most apparent regarding the ability to obtain insurance:

  • health insurance: to cover the cost of medical care including physician visits, diagnostic and therapeutic evaluations, hospitalizations, and treatments
  • life insurance: to protect dependents, an important consideration in building a family

It is in this respect that patients with congenital heart disease, and those with other long-term disorders, encounter considerable disappointments and difficulties.

Health insurance is often tied to the benefits of employment, and employability is often unfavorably judged by employers afraid of increased risks of claims. During childhood and adolescence the patients may be adequately protected by the insurance plans of their parents and they may not expect to have major worries fall upon them as they become independent.

The Cardiology Societies have shared this concern and have helped to negotiate appropriate considerations for their patients. Since the early years of cardiac surgery, cardiologists have undertaken an active role in achieving favorable considerations for patients with mild and those with successfully operated heart disease. However, patients with severe malformations or post-operation complications often encounter difficulties. Social Security disability benefits are available for patients with significant heart disease, but receiving this assistance may prevent the patient from seeking even light employment. Thus, employment and insurability represent some major hurdles confronting many patients.

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