Insurance Issues

What about insurance?

There are several types of insurance that a person with Lynch Syndrome must be concerned about.

Health Insurance

The Genetic Information Nondiscrimination Act of 2007 (GINA) prohibits insurers from using genetic diseases in determining the insurability for patients with Lynch.

Prior to the passage of the Affordable Care Act (Obamacare),  insurance companies were able to exclude people with preexisting conditions from their health  insurance policies.  Even worse, if a person developed cancer, their insurance rates may have gone up considerably or they might not qualify for insurance. Fortunately the Affordable Care Act took effect for children on September 23, 2010 and adults on January 1, 2014. While this preexisting condition policy was thought to be set in stone, it was almost overturned in 2017. Hopefully these federal mandates will stay in place for the 1.2 million people in this country with Lynch syndrome due to the increased risk of multiple types of cancers and subsequent costs of screening and treatment.

Disability Insurance

The GINA Act does not prevent insurance companies from using Lynch Syndrome in their underwriting for disability insurance. This may prevent a person from obtaining reasonably priced disability insurance once the diagnosis is made. For this reason, you may want to buy a disability policy before any genetic testing for Lynch Syndrome is undertaken. You could also buy an insurance rider that would allow you to increase the amount of insurance in the future based on current income without having to go through underwriting again. Lastly, you may also want to purchase a COLA rider. This will automatically increase the amount of disability based on the Cost of Living.

Life Insurance

The GINA Act does not prevent insurance companies from using Lynch Syndrome in their underwriting for life insurance. This may prevent a person from obtaining reasonably priced life insurance once the diagnosis is made. For this reason, you may want to buy a life insurance policy before any genetic testing for Lynch Syndrome is undertaken.

Due to the unfairness of this practice, in 2020, Florida passed a law prohibiting life insurance companies from using “predictive genetic tests” when underwriting life insurance. California restricts the use for “unaffected carriers” for recessive disorders in any insurance policy. However,  since Lynch syndrome is an autosomal dominant condition, this does not apply. In Vermont, insurance companies cannot require a genetic test but can utilize the information if the results are already known. While insurance companies would like to continue this practice, there are multiple health care advocacy groups, including CCARE Lynch Syndrome, that are working to prohibit the use of genetic testing for life, disability, and long term care insurance throughout the country.

Long Term Care

The GINA Act does not prevent insurance companies from using Lynch Syndrome in their underwriting for long term care insurance. This may prevent a person from obtaining reasonably priced long term care insurance once the diagnosis is made. For this reason, you may want to buy a long term care insurance policy before any genetic testing for Lynch Syndrome is undertaken.