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.
Colonoscopy Coverage
The Affordable Care Act (ACA) mandates that commercial insurance companies cover a screening colonoscopy without any out-of-pocket costs. A screening colonoscopy is supposed to be ordered for you based on a history of Lynch Syndrome. Occasionally a diagnostic colonoscopy is ordered instead. A diagnostic colonoscopy is only supposed to be ordered if there was a problem such as diarrhea, bleeding, pain, or from an abnormal test like a stool test, x-ray, etc. If that is done patients may have to pay thousands of dollars to cover their deductible, copayments, etc. It is important that the physician’s office file the procedure with the correct codes, which is often confusing.
A standard screening colonoscopy has a CPT billing code of 45378. Sometimes when a physician discovered an abnormality during the procedure the colonoscopy is changed to a diagnostic colonoscopy which is not fully covered. To help maintain as much coverage as possible for the preventive colonoscopy, if a biopsy was done during a procedure that was meant for a screening test, a modifier code of 33 should be added and it should not be changed to a diagnostic colonoscopy. Thus the submitted code would be 45385-33, which means a screening colonoscopy with a polyp removal. That allows for an additional procedure while still qualifying for a screening. The modifier code of 33 is used for commercial insurance. If the patient has Medicare, a code of PT is used instead.
It is also important that the diagnostic or ICD-10 code of Z15.09 is used to signify Lynch syndrome (genetic susceptibility to other neoplasms). This classifies the person as a high risk individual for colon cancer which supports colonoscopies at an earlier age and more often.