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/lukewarmcheesestick]

It means the diagnosis codes attached to the tests ordered are for screenings. Like “screening for breast cancer” you have to meet specific criteria. https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/whole-exome-and-whole-genome-sequencing.pdf

[u/bucklekitty → u/lukewarmcheesestick]

I do qualify per this criteria.

I have multiple birth defects that have seemed to cause me no harm thus far, I don’t have the energy to dig up the actual names right now, but there is a defect in the shape of some vein in/near my kidneys, a vein in my neck (carotid artery maybe?), something with my umbilical area, and I’m sure other things I don’t remember / haven’t proven great clinical significance yet. I know the kidney defect puts me at a higher risk of death with anesthesia, but I’ve only been put under four times and I’ve been fine so far. I forgot the name, but I was born with defects in my knees as well. I was told I could have a derotational osteotomy after 21 y/o but I manage with the pain. I definitely have those medical records as the doctor sent them to me about a year ago after I requested the documents for an unrelated more recent MRI.

If Asperger’s is considered an intellectual disability, I haven’t been formally diagnosed, but my sister and my father were. My current psychiatrist said it’s not worth testing me since I’ve managed to learn how to interact socially through my job over the years.

I have had Tourette’s my entire life, but I’ve never been formally diagnosed. It doesn’t affect me that much, although I experience motor tics pretty much 24/7 and have experienced this since I was very little. I would injure myself as a little girl and get in trouble for it (rolling my stomach was my first tic). There are probably notes of it in my psychiatrist records, but Florida will not allow a patient to see their psychiatric records.

My father was formally diagnosed through court-mandated psychiatric testing with OCPD, a form of OCD. I definitely have OCD, but I have not had clinical testing. I have also been diagnosed with bipolar disorder in the past, but my current psychiatrist decided I don’t meet the criteria anymore and removed it from my diagnoses. I was diagnosed with bipolar at 17 y/o and I used to be treated with lamictal until I developed the Steven’s Johnson rash.

I guess I could reach out to the geneticist with this information and provide him as much evidence as possible if it would help. My father is dead and his psych eval was done over 20 years ago so I’m sure those records are long gone, but my psychiatric records are probably obtainable and the medical records indicating my random birth defects are in my hospital patient portals. They were all found incidentally.

Something is definitely different with my body, so I’m really hoping there is a way to get this full panel done. I know I will probably never have another life insurance policy, but I don’t think I’d qualify with my current medical record anyway.

[u/lukewarmcheesestick → u/bucklekitty]

Unfortunately you would need documentation of all of that and a dx not just your word that you have it. If you’ve reported this to doctors then it should be in your medical records. They should be doing an appeal for you.

[u/bucklekitty → u/lukewarmcheesestick]

Most of the physical birth defects are listed in the records that the geneticist’s office have access to, but I’m going to add the medical reports regarding my knees and the report from my last rheumatologist who attempted to refer me to oncology.

I can probably have my childhood psychiatrist forward my information to the geneticists office as well, though they tried to charge me $300 the last time I requested them to release my records to another doctor.

I don’t have any medical records for my father, unfortunately, but my mom might still have the court record documents where it was stated. I remember the name of the psychiatrist who ran the testing, but I don’t think she’d still have the records although her practice is still active.

I definitely could obtain the medical records for my mother’s breast cancer, since she still sees the same oncologist.

My sister sent me her asperger’s paperwork a few weeks ago because she had questions about it, so I have that as well.

Hopefully all of that would be enough, but if the genetics lab tells me there’s a cheap self-pay option I’m going to do that and save myself the hassle.

The only issue I can see is that all of us have different last names - my mom, my sister, my dad 😩 I’d have to find all the death and birth certificates probably