Insurance Issues

If your child has been diagnosed with cardiomyopathy, you may be concerned about high health insurance premiums. The easiest way to ensure medical coverage is to include your child in a group health plan provided by your employer. Under such a plan, all family members are covered regardless of pre-existing health problems. Once your child gets older, he/she can either be covered by his/her university health plan or a future employer.

Evaluating Health Insurance Plans

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. Factors to consider in selecting a plan are 1) premiums and co-payments per 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. Children with cardiomyopathy require frequent visits with specialists so a POP or POS plan is preferable over a HMO. HMO's require referrals for specialist visits that may create delays in getting proper treatment. Also, out of pocket expenses for HMOs may be higher because of more restrictions on coverage.

If insurance coverage is a concern, certain states require private insurance companies doing business within that state to offer open enrollment periods to people with preexisting conditions who may otherwise be uninsurable. Some states also offer comprehensive risk plans to help people with high-risk medical histories. You can check with your state government offices and state insurance commission for information. The National Association of Insurance Commissioners (NAIC) provides links to each state insurance department.

Insurance Coverage of Genetic Testing

In many cases health insurance plans will only cover the costs of genetic testing when it is deemed medically necessary and supported by a physician letter of recommendation. Elective genetic testing is rarely covered, but many genetic testing companies are now working with insurance carriers to have laboratory fees covered. The specific genetic tests that are covered will vary from among health insurance providers.

Some families choose to not use their insurance to pay for testing and pay out of pocket instead because they are concerned that the genetic testing results may affect their health and/or life insurance coverage. There are several laws that seek to protect families from discriminatory practices. The Genetic Information Nondiscrimination 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), generally prohibits health insurers/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. More detailed information genetic discrimination can be found on the National Human Genome Research Institute website.

Because there is so much variability about which tests are covered, a family interested in having their health insurance pay for genetic testing should contact the insurance company beforehand to ask about coverage. Each state has legislation on what should be legally covered by health insurance companies. This information is available on the Genome Statue and Legislation Database

There are several good resources that provide additional information about genetic testing policies and discrimination. These sites include:


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