Insurance Issues
Once an individual has been diagnosed with Lynch Syndrome, they will probably have difficulty obtaining certain types of insurance.
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 stopped insurance companies from engaging in this practice. This 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 this will stay in place for the 1.2 million people in this country with Lynch syndrome.
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 advise patients to buy a disability policy before any genetic testing for Lynch Syndrome is undertaken.
An insurance rider can also be purchased that would allow future increases in the policy based on future income without having to go through underwriting again. Also, a Cost of Living or COLA rider is another option for patients to consider.
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 should advise patients to consider purchasing a long term care insurance policy before any genetic testing for Lynch Syndrome is undertaken.
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 should advise patients to purchase 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.