Access to Genetic Testing: You Deserve Better!

Since the discovery of the first channelopathy-causative genes in 1992, genetic testing for channelopathies has advanced from basic scientific discovery to clinical application. Today, the majority of channelopathy genetic tests are clinically available, and are extremely useful for diagnosis and screening.

Since the discovery of the first channelopathy-causative genes in 1992, genetic testing for channelopathies has advanced from basic scientific discovery to clinical application. Today, the majority of channelopathy genetic tests are clinically available, and are extremely useful for diagnosis and screening.

In particular, the value of LQTS genetic testing has been well documented in the medical literature. Consensus statements and guidelines uniformly recommend genetic testing for all LQTS patients to enable accurate risk stratification, guide therapeutic strategies and to identify potentially at-risk family members.

So why don’t most Medicaid plans cover genetic testing? Why did Tricare (the military insurance plan) drop coverage of more than 100 tests including the tests for Long QT Syndrome and other channelopathies? Why do private insurers cover (part of, but not all of) the cost of (some, but not all) genetic tests?

You deserve better! Most tests for channelopathies cost thousands of dollars, and we are committed making these tests available and affordable to all of our families. There are many ways we help do this:

•   We work with non-profit health advocacy organizations such as Genetic Alliance to petition legislators on our behalf. We want laws to prevent insurers from denying coverage of useful genetic tests (including channelopathy tests) just because they are not cleared by the FDA.

•   We work with genetic testing companies to push for increased insurance coverage for channelopathy genetic tests, to make them more widely available and affordable for our families.

•   We support research that advances our knowledge of the channelopathies, including identification of new gene mutations, and increased knowledge about the clinical course of known mutations in order to improve risk-stratification and disease treatment.

We believe that with genetic information families can better understand their genetic risks and when necessary, take preventive action. Lowering costs of testing and making tests easier to get will help families everywhere. We believe that by working to make these genetic tests more available and affordable we are giving families information that will help save lives.

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Warning Signs
- Family history of unexpected, unexplained sudden death under age 40.
- Fainting or seizure during exercise, excitement or startle.
- Consistent or unusual chest pain &/or shortness of breath during exercise.

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Warning Signs