Aetna wants to deny coverage for Lynch Syndrome testing as “Experimental/Investigatory” and despite family history specified in request to LabCorp Aetna says I don’t meet testing criteria.

Early 40s, MD area. This is after the fact of course. The test came back positive for Lynch with Likely Pathogenic MSH2. My sister’s PET scan is clean after a brief fight with sebaceous carcinoma. The pathology for that came back as Muir-Torre syndrome. My father died from Colon cancer relatively young with his first battle with it in his 50s. Also diagnosed as Muir-Torre and he had the cysts removed going back into his 40s. So I don’t know what else I can do as far as proving pedigre to these people. Every doctor I have spoken to says I meet all current standards for getting tested. There is no mention of it being an experimental test or not being covered by my employer’s plan. I eventually got to someone who said they need a letter of medical necessity from my dr. But my doctor says he submitted that with the lab request. Is this typical for Aetna to run people through the ringer for what should just be routine labwork? And the best part of course is the list price of the test runs north of $9,000. I assume that without the test of course I would be getting denials for having a yearly colonoscopy so I’m pretty much screwed no matter what. Choice POS II/Maryland.

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Early 40s, MD area. This is after the fact of course. The test came back positive for Lynch with Likely Pathogenic MSH2. My sister’s PET scan is clean after a brief fight with sebaceous carcinoma. The pathology for that came back as Muir-Torre syndrome. My father died from Colon cancer relatively young with his first battle with it in his 50s. Also diagnosed as Muir-Torre and he had the cysts removed going back into his 40s. So I don’t know what else I can do as far as proving pedigre to these people. Every doctor I have spoken to says I meet all current standards for getting tested. There is no mention of it being an experimental test or not being covered by my employer’s plan. I eventually got to someone who said they need a letter of medical necessity from my dr. But my doctor says he submitted that with the lab request. Is this typical for Aetna to run people through the ringer for what should just be routine labwork? And the best part of course is the list price of the test runs north of $9,000. I assume that without the test of course I would be getting denials for having a yearly colonoscopy so I’m pretty much screwed no matter what. Choice POS II/Maryland.
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