Overcoming Insurance Hurdles for Monitoring GIST

I have been a GISTer since 2022, when my large stage-four, inoperable tumor was diagnosed. Since then, The Life Raft Group has been an invaluable source of support, advocacy, and education.

After seven months of imatinib therapy, my tumor was reduced by about 70% in volume and surgery was possible. And successful! I am grateful for my surgical oncologist, Dr. Chandrajit Raut, and his team at Dana-Farber Cancer Institute and Brigham and Women’s Hospital in Boston.

Since my surgery, I have been traveling six hours from home in upstate New York to Boston every three months for CT scans, lab work and appointments with Jean Thierry Alcindor, MD, my medical oncologist at Dana-Farber. The National Comprehensive Cancer Network (NCCN) guidelines recommend this three-month follow-up schedule for high-risk cases.

I appreciate the opportunity to share a recent insurance hurdle in getting approval for regular three-month checkups:

In 2025, I switched to a BC/BS Medicare Advantage Plan (MAP) operated by Excellus in New York State.

Unlike a Medicare Supplemental Plan, prior authorizations in a MAP are common to keep the costs to the insurance companies down and avoid unnecessary use.

Step 1: My medical oncologist requested prior authorization for the CT. Excellus contracts with EviCore to assess the appropriateness of imaging. EviCore denied the request because they did not think my case was high risk and I should therefore have CT every six, not every three months. This meant that without further pursuit, my insurance would not cover the CT when I needed it. We did not give up.

Step 2: Following EviCore and Excellus guidelines for the appeals process, my medical oncologist next participated in a Peer-to-Peer discussion with an EviCore representative. EviCore still denied his request.

At this point, I reached out to the LRG for guidance. I spoke with Toni, who helped me understand my options. Toni provided insights on how to leverage NCCN guidelines and the size of my tumor to strengthen the appeal. She also helped me outline a strategy for gathering supporting documentation from my medical team.

Step 3: With LRG’s insight and support, my medical oncologist quickly sent a letter of medical necessity to Excellus BC/BS to further appeal the denied authorization.

This appeal was successful, and I was able to get insurance coverage for a CT within the recommended timeframe. This is based on the classification of my high risk due to the size of my tumor and application of the NCCN Guidelines for GIST imaging.

I learned from this experience to never give up. Be patient, polite, and persistent. If there is a denial, try to find out why. Seek insight from the LRG and continue to follow insurer’s guidelines for the appeals process. If science and gold standard guidelines are on your side, keep pushing. While insurers may contract with third party companies to review requests for prior authorizations, when denied, appeal directly to the insurer.

There are many worthy causes in this world. The LRG is a particularly worthy investment in our future. The LRG truly empowers GISTers to live their best lives possible. Please join me in supporting them.