Insurance Coverage and Heart Defects

Couple sitting at kitchen table looking at their bills

Health and life insurance provide the foundation to help you protect your family finances and achieve your life goals. Understanding insurance billing and coverage can be tricky, especially when you have congenital heart disease. But knowing a few simple facts can make things much easier.

Health insurance

Most significant congenital heart conditions require lifelong monitoring and treatment by a cardiologist. That's why it's important to obtain and maintain adequate health care coverage with a policy that lets you see physicians with special knowledge of adults with congenital heart disease. In most cases, as you reach adulthood you won't be able to obtain health insurance through your parents' policy.

Seek plans that don't have pre-existing condition clauses that may exclude coverage for your heart disease. Generally, the best way to get coverage is through your employer's group health insurance. Most large companies will offer you group health plans at reasonable rates, despite your heart condition. If your heart condition is relatively complex, be sure your plan allows you access to a cardiologist who's experienced in treating congenital heart disease in adults.

If you have health insurance through your employer, be very careful when changing jobs or policies. You may not be eligible for coverage under a new insurance plan or policy, based on specific exclusions, or there may be waiting periods before you can receive full benefits.

If you don’t have insurance through your employer, you may want to buy a plan on your own through the Affordable Care Act’s Health Insurance Marketplace. The Affordable Care Act made it easier for people without health insurance or who are looking to switch health insurance plans to find quality, affordable insurance. All health plans sold through are offered by private insurance companies and must meet minimum requirements.

These ACA-compliant plans are required to cover a comprehensive set of benefits including hospital care, doctor visits, emergency care, prescription drugs, lab services, preventive care and rehabilitative services. Insurers are not allowed to charge more or discriminate against people based on health status, health history or gender. The ACA also allowed children to stay on their parents’ insurance until age 26.

Life insurance

Young adults with many congenital heart conditions can usually buy life insurance without difficulty, but the cost may be higher. Term life insurance, especially if bought through a group such as an employer, is often affordable and requires less medical information to enroll. Insurance companies vary a lot in how they consider congenital heart disease when offering life insurance. Compare information from different companies before drawing conclusions about your insurability. An insurance agent who doesn't work for just one company (i.e., an independent agent) may help you compare policies.

Even if you were denied a life insurance policy as a child, reapply as an adolescent or adult. Many insurance companies will consider applications from adolescents or adults once the severity of their heart condition is known with greater certainty.

Information from life insurance applications is centralized at the Medical Information Bureau Inc., where insurance companies can see it. If you're having trouble getting insurance, you may want to have your bureau information forwarded to your doctor to verify its accuracy.

If you can't get life insurance, you may need to consider other ways to protect your family financially.

Financial support

While diagnosing and treating congenital heart defects with surgery is costly, there is help. Because the medical expenses of cardiac care are often extremely high, some families — even those with health insurance — need help to pay them. Fortunately, every state has an agency to help eligible families meet their medical expenses. Your health care team can provide more information about the program in your state and help you apply. The amount of financial aid you can get depends on the rules for eligibility in your state, your financial situation and health insurance policy, and the cost of cardiac care.