Available Services for Lynch Syndrome (Cancer)

Coverage of colorectal cancer screening tests such as colonoscopies and other colorectal cancer screening tests is required by the Affordable Care Act (ACA). However, genetic testing for Lynch Syndrome is not covered by the ACA. Some private insurers may cover testing, but it is likely that deductibles, copays, and cost-sharing will apply. You can find out your insurance plan's benefits and covered services by contacting your health insurance company or your employer's human resources department. There are other screening procedures for Lynch Syndrome, including Universal Screening. Universal Screening involves tumor testing every newly diagnosed colorectal or endometrial cancer case for genes associated with Lynch Syndrome. This tumor testing looks for characteristics of tumor tissue that indicate a mutation in one of the genes associated with Lynch Syndrome by using microsatellite instability (MSI) and immunohistochemistry (IHC). If the tumor testing comes back positive then the person is referred on to genetic testing and germline testing. The aim of this is to identify more persons with Lynch Syndrome and thus get those persons into the proper screening schedule in order to reduce morbidity and mortality from Lynch Syndrome-related cancers. While genetic testing is not always covered by health insurance, Universal Screening may be more accessible if your insurance covers cancer biopsies. Check with your health plan to determine if diagnostic tests after cancer screening are covered.