We hear often from patients and families who are having difficulty getting an insurer to pay for genetic testing of FSHD. It is our impression that the payors are denying claims based on incorrect assumptions about the medical benefits of genetic diagnosis, or outdated information about the heritability of a genetic disease that can cause few or no symptoms in a parent yet result in a disabling condition in the child.
To help individuals contest the denial of a claim for genetic testing, we have created our Letters requesting insurance coverage for genetic testing (templates), which have been reviewed by a genetic counselor for accuracy. Click on the link above to download this word document. You can copy, paste, and edit the applicable portions to create a letter that addresses your individual circumstances.
You may also find useful this video from our 2017 Bay Area FSHD Family Day conference, in which Dr. Neil Solomon explains how insurance works and how patients can assert their rights effectively.