Denial Letter for HNPCC Test from Insurance Co.

[SlobberDog]

Hi again,

I got the official denial letter today from Coventry, from the "Medical Director." They have deemed that the genetic HNPCC test "is not medically necessary" for me, with the principal reason for the denial being:

"It appears that only two relatives have HNPCC-associated colorectal cancer; data is not available regarding exclusion of familial adenomatous polyposis and that the tumors had been identified by pathological exam."

Then they write that the "clinical rational" for the denial is available upon request... YES I AM GOING to request it! And they also include the page explaining my rights to appeal, which I WILL BE DOING.

By my own understanding, I do "qualify" for the testing if using the Amsterdam Criteria, AND/OR if using the Revised Bethesda Guidelines... but perhaps NOT qualify if they use the "Amsterdam Criteria II," which does specify the "3 relative" rule.

What a deal. But as I blurted out last week, my husband and I told Myriad to just please process the damn test, and we'll pay for it out of pocket. IF we can be reimbursed by insurance and win an appeal, then great. If not, at least I will have the (expensive, haha) peace of mind of "knowing", one way or the other. And heaven forbid if I am positive, then my sister will be more likely to get her *ss in gear and be tested, have c-scopes, etc - and also watch carefully for her own daughter. (Short of my being positive for HNPCC, I don't think my sister will pay attention.)

My dad was Dx 20 years ago and has been dead 15+ years. I asked my sister and frankly we can't remember the hospital(s) where he had his 2 colon surgeries (the original colon resection, then later for the recurrence - we don't even know if it was the same hospital or surgeon.) He'd also had lung surgery and brain surgery (twice) so it is all just jumbled in our minds... I was in college that entire time and my sister in high school, and then college. Our stepmother died in 2002 so we wouldn't even know where to start looking for that information or to get our mitts on the medical records, to try and find "tumor block" info and details, etc. I know for CERTAIN that my dad did **not** have FAP, but I don't have any written and medical "proof." Grrrrrr.

I'll work on the appeals process and keep you posted. And thank you for the support and for the PMs and emails with ideas. Having a "team" behind me helps a great deal.

Best wishes,
Michelle

[suzannchili]

I was denied twice before "third time's a charrm" and the insurance paid for it. However, pick and choose your battles. I am not sure it was worth it! Regardless of the reults, I am a stage III survivor and will get my follow-up exams as necessary. Also, any first degree family should be alarmed and get tetsed and screened regularly. These facts didn't change with genetic testing (I am positive for a mutation). My son, born after this ordeal will still be tested at an early age, 16 although he may not be a carrier. The only thing that changed is now I will have a colonoscopy every 2 years instead of 3.

On the other hand, I am very concerned insurance companies may consider this a "pre-existing" condition in the future and maybe I shouldn't have had the test. It may come back to haunt me.

Having a genetic mutation isn't going to save you- you and all first degree family members should be proactive regardlesss! To play the devil's advocate, what if your testing comes up negative- and everyone then feels safe? This could go wrong.

I am sure you will make the right decision, but please don't waste your time and energy where it may not be worth it!

I'd be happy to discuss this with you further should you choose- please send me a private message and I'll share my phone number.