Carcinoid Digest Extracts – Insurance

NOTE: The Carcinoid Digest extracts provided below are listed below not by topic but by date (oldest first) and email threads are separated by “******************************”.  Related email threads will have the same email subject and within each email thread the more recent email(s) will be at the top of the thread.   I’ve taken the liberty to edit out some of the email text (i.e., email footers) not pertinent to the topic – sometimes represented where I’ve inserted “…”.  I have not made any edits to the email writer’s content but have enabled URL links so you can just click on it to check out the listed sit.


Date: Mon, 3 Jul 2017 08:32:25 -0700
From: azad Karim <gulzar746@GMAIL.COM>
Subject: Re: Fwd: [CARCINOID] Med: Sando Sub Q Help now WHAT??? Dr. Woltering – Anyone

I found this in
You might contact him for advise.

If you are a carcinoid/neuroendocrine cancer patient and you have had your
insurance denied, you can reach out to Michael Farris for guidance at
Date: Thu, 10 Aug 2017 23:09:05 +0000
From: “Woltering, Eugene” <EWolte@LSUHSC.EDU>
Subject: Re: Insurance approval for GA-68 Netspot scan

Blue cross has turned me down 100% of the time
I have wasted hours on trying to educate them
Peer to peer discussions have failed miserably
Looking to change my personal insurance based on their response

Sent from my iPhone
Eugene A Woltering MD

> On Aug 10, 2017, at 5:32 PM, Elaine LaToza <e2006latoza@COMCAST.NET> wrote:
> Well, I tried to get the newly FDA-approved GA-68 (commercial name is Netspot) scan and failed. My local oncologist ordered it and my medical insurance denied it, saying ‘a PET scan for breast cancer must follow another scan with unclear results’. They obviously got the type of cancer wrong and the scan sounded wrong, too, so I asked my oncologist to appeal it, but she said she didn’t want her staff spending the time on an appeal.
> So I went to my Carcinoid Expert doctor, who is directing my care. He ordered it, it was denied, and this time they said, “This test should be used to look for certain types of cancers and when certain conditions are met. Your doctor did not tell us that you are having this test for this purpose.” When I contacted my doctor, he said all Netspot scans are being denied and he did not want to spent any more of his staff’s time on appeals, since they were all being turned down.
> When I talked with my insurance company, they said a PET scan must be pre-authorized, but the “add-on code” to make it a GA-68 scan does not need pre-authorization. So they only look at it as a PET scan.
> How do we get insurance to start paying for the Netspot scan??
> Elaine
> near Seattle
Date: Thu, 17 Aug 2017 14:36:36 -0400
From: Jennifer Ziegenhirt <jsugrin@YAHOO.COM>
Subject: Re: Insurance approval for GA-68 Netspot scan (Success with CIGNA)

I had my Gallium scan (at UCSF) a few weeks ago.
It was summarily denied by my insurance and the medical assistant said my doc just wanted me to have the Octreo instead. I pushed back firmly, because I suspected a sneaky weasel was hiding that had not been found by Octreo. I asked them to specify that due to the higher level of sensitivity shown in the Gallium Scan Dr. was requesting approval because of inability to local source of issues.
Appeal was approved.

I have CIGNA insurance so if anyone else has the same and needs to use our approval to help their process I’m happy to share whatever info your Dr.’s office would want (names, dates, ??? ). And hopefully some of you folks with BCBS will help them see the light quickly.

Not only did we find the weasel the Gallium Scan found 2 MAJOR areas that had never shown up previously. One is a tiny bugger in the pancreas that was suspected but small enough it’s reasonable the Octreo did find it but I also have 2 tumors in the HEART, one about 1cm and the other 1.2 X 1.5CM (there is always that off chance it’s an aytypical and wasn’t there on my last Octreo but I’m 33 years in this game with hundreds of tumors and have never had an aytypical so I suspect it’s been there awhile).
Date: Fri, 18 Aug 2017 10:43:49 -0400
From: Susan Aronson <saronson2661@COMCAST.NET>
Subject: Insurance and Gallium 68 PET scan

Here are some thoughts for those seeking GA68 approval from their Insurance Company.

The guiding document for the claimant will be their Summary Plan Description ( SPD). This is a legally binding document which outlines critical terms and conditions of your coverage. Key terms to familiarize yourself with are the definition of medical necessity as well as the section on Exclusions.

When appealing a denial always reference your SPD and use the same language that is within your SPD.

Each Insurance Company has a system in place which outlines in very specific terms the clinical guidelines for determining medical necessity of any diagnostic procedure or treatment. You can locate this information on the internet in most cases. The information will help you formulate your appeal.

Make sure you supply the Insurance Company with the Medicare Code for GA-68. Supply them with this code even if you do not have Medicare because Insurance Companies will take that information into consideration.

If you work for a corporation and have a group insurance plan and have not had success with obtaining approval with the claim office of Ins Co. consider contacting your Human Resources department to ask for their assistance on your behalf. All Insurance Companies have a “contract exceptions department” where claim exceptions can be approved that are outside current contractual norms. It helps to have a company that will strongly advocate on your behalf.

If you have tried all the normal channels of appeal including peer to peer review by your physician and still have not gotten anywhere there are still avenues available you may want to consider. If you have a true insurance policy ( not self-funded coverage) you can contact your State Insurance Department. If you have coverage with an Employer via a self-funded or Administrative Service Contract you can contact the Department of Labor ( DOL) for assistance. All of that information should be shown in your SPD ( usually at the back of it) in the section on Appeals).

Additionally write letters to your state representatives and ask them to intervene on your behalf.

I am familiar with policies from AETNA as that is where I worked ( I’m retired). Their policies are listed on internet under Clinical Policy Bulletins on their web site.

In most instances for cancer related diagnoses AETNA considered the FDG-PET as medically necessary in very specific terms depending on the type of cancer for diagnoses, staging, or restaging. The guidelines for Gallium 68 PET scan will no doubt be similar. In almost all circumstances the “MONITORING” of tumor response during a course of therapy is not considered medically necessary ( exception is made for breast cancer). It is important when discussing appeals with Insurance Company to use the terms in ways they have defined. The use of PET scans will rarely be authorized when used as an initial scan for the purpose of diagnosis unless it can be proven to assist in avoiding an invasive diagnostic procedure.
If a tissue biopsy has already confirmed the diagnosis of the cancer then the Term ” Diagnosis” is no longer part of the argument. The key words are “staging” or “restaging”. PET scans would be considered medically necessary in those situations in which clinical management of patient would differ depending on STAGE of cancer and if the stage of cancer remains in doubt AFTER completion of standard diagnostic work-up ( includes conventional scans) or if it can be proven that the PET could replace conventional scans ( because conventional scan does not provide sufficient data to allow for clinical management of patient).

When discussing RESTAGING- this is typically defined as occurring after completion of treatment for the purpose of detecting residual disease or recurrence or extent of recurrence in those patients with symptoms or signs of recurrence. NOTE: PET for post treatment SURVEILLANCE is considered experimental and investigational. Surveillance means use of PET scan post treatment on a patient in the absence of any signs or symptoms of cancer progression or recurrence in order to predict/ detect progression.

I hope the above information may help us all to get coverage approval.