Molecular studies as necessary medical treatment

Are you saying that your insurance company won't pay for the pathology of your tumor to determine which mutations you have? Please clarify "molecular studies".

Yes. They denied payment and the reason is “not medically necessary”. They paid for the genetic studies but not the molecular studies. The cost was $20,000. I am appealing this decision and my oncologist is writing a letter as well.

I would like to know where you are receiving your care as it sounds absurd to me. You need to know what your pathology is in order to receive the best treatment that is directed to your mutations. You can have somatic tumors that aren't germline (inherited). It sounds like you don't have Medicare yet? I have a Medicare Advantage PPO Plan and they have been an excellent payor. I wish you luck in your appeal, but you certainly shouldn't have the extra stress at a time like this.

Appeals are best written by your physicians.
I went through this on the Y90 done to my liver. I discovered that often practices have the appeal written by a nurse or NP that pulls some standard language. That didn’t work for me. I had to have my surgeon intervene. He did and it quickly was approved. Ask your doctor to personally write it. Also , ask for them to speak with the intermediary physician that your insurance uses to qualify or deny these claims. Yes, there is actually another link in the chain😠

Thank u! I was hoping it was just a knee jerk response and a simple letter from myself and my oncologist would get an approval. It does seem like the insurance company physician would understand the dire situation and need for precision therapy. I will include the request to have oncologist spect to the “expert”. Thanks again.

Thank you. The Norton Cancer Institute in Louisville Ky with Anthem employee plan. I have faith I will get it approved if I could include some research and peer reviews. The one good article I found was from India.
Will Keep u posted.

Agree that doctor should deal with appeal. But in my experience, that doesn't mean that they will, or if they do, that they'll do a good job.

Was your molecular testing done in-house, or was it sent to an outside company? Which one? I have a story about Caris, which I can share if relevant.

Caris was the one, yes.
Got the letter from the Dr, and it was written by his PA.
I added to my appeal the oncology is willing to
discuss with the decision team/physician. Hope that helps.

Sometimes the "appeal" process is very "one-way," and the magic word/process is a "peer-to-peer phone call" between your doctor and an insurance company doctor.

That may get down to the root of the matter more quickly than appeals and back-and-forth letters that are trying to hit a moving target.

Ah, Caris. I had Caris testing done in June 2024. It took the hospital a month to send them the biopsy specimen from April (which was done for the sole purpose of getting molecular testing), in part because they were "getting insurance pre-approval.". After I got the results, I starting getting demands from the insurance company for more documentation, which the doctor and I tried to provide, but which they declared insufficient. I was freaking out.

While trying to decide how to deal with this (I did not trust my oncologist's office to do a good job), I called Caris. They said that if your insurance denied the claim, Caris would only charge $350. But if the insurance company accepts the claim, you actually could be on the hook for more than that. Caris was out-of-network, so I was going to have to pay for it up to a substantial deductible. So I calmed down and decided to just let it play out.

My Caris test had two parts: immunohistochemistry (list price ~$4000) and DNA/RNA sequencing (list price $21,000). The insurance company eventually approved the IHC, saying that I owed ~$1000 for it. They denied the sequencing, so my out of pocket expense was listed as $21,000. Caris billed me the ~$1000 for the IHC, so I called Caris and complained. After filling out a form describing my income, I eventually paid $45 to settle that bill.

At that point, Caris said they were still trying to get the insurance company to approve the sequencing. I suspect approval would land me with a bill for ~$7000 (after the insurance discount). This was over 6 months ago and I haven't heard from them since. No bill. I'll happily send Caris another $305 if they bill me for it. But beyond that I'm going to cause problems. I'm starting to wonder if they're waiting, in the hope that they can bill my estate when I'm no longer in a position to complain.

The takeaways from this story are 1) that you should try calling Caris, and 2) that it may actually be cheaper for you if the insurance denies it, although it may drag on forever.