When your child is diagnosed with a chronic condition like cardiomyopathy, health insurance takes on a greater importance. Most families receive medical coverage through a private health insurance plan provided by their employer. If a parent is self-employed or does not receive health insurance through their employer, a government resource like can provide information on other coverage options. This includes the Health Insurance Marketplace plans, Children’s Health Insurance Program (CHIP), or Medicaid programs.

For international families, CCF has developed a “Health Insurance Information” fact sheet, which is available on CCF’s online community, CCF Connect. In general, U.S. health insurance is required before any medical services can be provided. Non-U.S. citizens can purchase worldwide health insurance while living in their country of citizenship.

Affordable Care Act

The Affordable Care Act (ACA) makes affordable health insurance available to more people. It also requires insurance plans to cover individuals with pre-existing conditions. Under the law, health insurers cannot deny coverage, or charge you or your family more because of a pre-existing condition. Additionally, the ACA allows young adults to stay on their parents’ insurance plan until age 26.

Some grandfathered health plans do not to offer the same rights and protections as state Marketplace insurance plans. Make sure to check your health plan to ensure there is no pre-existing condition clause that may exclude coverage for your child or family.

Evaluating Health Insurance Plans

Choosing a health care plan can be somewhat confusing. When selecting a health insurance plan, there are several pros and cons to consider when comparing the different options. Common plans include health maintenance organization (HMO), preferred provider organization (PPO), point of service (POS), and indemnity plans.

Children with cardiomyopathy require frequent visits with specialists so a POP or POS plan is preferable over an HMO. HMO's require referrals for visits to specialists that may create delays in getting proper treatment and limit your physician choices. Also, out of pocket expenses for HMOs may be higher because of more restrictions on coverage.

Other factors to consider in selecting a plan are 1) premiums and co-payments for each medical visit, 2) need for a referral to see a specialist, 3) flexibility in negotiating claims, 4) deductible requirements and benefit payout ratio 5) types of specialist services covered, and 6) limitations on "in network" versus "out of network" doctors. For guidance on how to pick the best plan for your family, visit

Not every health plan covers all medical expenses and medications. If yours does not, you can make an appeal to your insurance company. For advice from the American Heart Association on appealing health care coverage, click here.

Genetic Testing Coverage

Health insurance plans have varying policies when it comes to covering the cost of genetic testing. A family interested in having genetic testing done should contact their insurance company beforehand to ask about coverage. In order to make testing more accessible, genetic testing companies may work with your insurance company to coordinate coverage and payment or provide financial assistance if needed.

Some families choose to self-pay or pay out-of-pocket instead of using their insurance plan because they are concerned that the test results may affect their health and/or life insurance coverage in the future.

Protection from Genetic Discrimination

Family members who decide to do genetic testing may be concerned about the privacy of their results and whether their genetic diagnosis could be used by insurance companies to deny coverage or determine premiums. There are several laws that seek to protect individuals from discriminatory practices. The Genetic Information Non-Discrimination Act (GINA) is a Federal law that prohibits discrimination in health coverage and employment based on genetic information. GINA, together with provisions of the Health Insurance Portability and Accountability Act (HIPAA), prohibits health insurers and health plan administrators from using genetic information to make decisions regarding coverage and rates. It is important to note that GINA’s protections do not extend to life insurance, disability insurance, and long-term care.