UHC denying medically necessary cancer genetics testing, which was the second option since they wouldn’t approve a mammogram.

[u/bucklekitty]

Hello,

My mom had breast cancer at 32.

My father had skin cancer at 48.

My grandmother had ovarian and thyroid cancer before the age of 30.

I have already been Dx’d with moderate atypia of the skin which has required two MOHS surgeries

I have already been Dx’d with a BIRADS-3 breast mass and a TIRADS-4 thyroid nodule. I have also had precancer of the cervix, which required surgery. It progressed from CIN 1 to CIN 3 in a matter of three months, which is almost unheard of.

This all led my OBGYN to order a mammogram for me. This was denied.

She finally said fuck it, we will send you to a geneticist - if you test positive for BRCA or other relevant cancer genes, your insurance has to approve other testing and procedures for you.

But United just denied the testing ordered by the board certified geneticist because it wasn’t medically necessary.

So what now? I waited 7 months to see the geneticist and another month for the test to get denied. I’m frustrated. I know my geneticist will probably go to bat for me, but I know of the United horror stories.

Is there any chance I wind up having to pay thousands of dollars for this? Should I wait it out? Do I have other options?

Edit:

Everyone in the comments has been so wonderful and helpful and I am extremely grateful for all of you. When I posted this, I had just woken up to the news of the insurance denial and I posted this in an emotional heat of the moment frustration. My therapist had me stop googling stuff related to my health earlier this year, which I had become good at, but after reading all of these comments I realized that there are things I do need to be knowledgeable about in regards to this process, and that I definitely need to kick myself into gear for the time being.

I have already alerted the geneticist of the insurance issue, and they told me to message them in the portal as well. A commenter posted this link:

https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/whole-exome-and-whole-genome-sequencing.pdf

Which made me realize that there are other relevant things that I wasn’t aware were relevant, and hadn’t mentioned to the geneticist during our consultation.

I am about to spend the rest of my evening pulling all of the relevant medical records and information and compiling it into an e-mail for the geneticist so that they are aware. I also contacted the genetics lab requesting information on their patient financial assistance program, and I plan on paying out of pocket for a mammogram later this month or early next month, and I also have a follow-up ultrasound this month as well.

Hopefully with the new info, the geneticist can either get my insurance company on-board, or send the order to a lab that offers a cheap self-pay option if Variantyx cannot assist. The package already arrived, but I haven’t opened it and don’t plan to unless everything is sorted out.

Thank you all again for the encouragement as well as helpful links and information. It means the world to me! I have felt like a looney toon for the past few weeks being only 26 y/o and even looking into this type of testing, almost gaslighting myself into thinking it was overkill, so I really appreciate all of the support.

[u/ReluctantReptile]

Average cost of a mammogram is like $500. Pay out of pocket for now

[u/bucklekitty → u/ReluctantReptile]

If the results are negative, do you think it would aggravate my ability to get BRCA testing in the future?

[u/ReluctantReptile → u/bucklekitty]

I have no idea but I don’t think that’s really a game worth playing. Get tested now if you have a lump.

[u/bucklekitty → u/ReluctantReptile]

I am a little mad at myself for putting all of this out of my mind since February. My therapist has been urging me to stop stressing over my health, and my last therapist did as well. My family and friends also say the same thing, so I have done a lot better at playing the waiting game and handling my anxiety in relation to all of this.

With my next ultrasound being in two weeks, it has been in my mind a lot more, especially after the geneticist seemed concerned enough to tell me a full panel would be the most beneficial.

Since the genetics testing seems like it would take months regardless of insurance issues, I think my best plan of action is finding a self-pay mammogram center, you are right. if I self-pay, my insurance company probably won’t have access to the records regardless.

[u/ReluctantReptile → u/bucklekitty]

That’s true! I’m honestly surprised insurance is denying a mammogram. I have a family history of cancer and I’ve found two lumps under 40, both cysts, but it was approved no issues at all. Genetics is an exclusion under my policy for all reasons though

[u/bucklekitty → u/ReluctantReptile]

My plan documents say genetics tested is covered for a $1 copay after meeting my deductible (which I have) lol. It says mammograms are covered for a $5 copay, but I’m assuming my age was the issue despite family history.